Posted on October 03, 2006 at 02:49 AM
A BIG thank you to all of you who donated to the 2006 JoeSchmidt.com Blogathon benefitting the Osteogenesis Imperfecta Foundation. As of 5pm EDT October 2nd we raised $725 for the OI foundation. I've got the a list of all thos elgible for the drawing, so let's see who will win the 4GB Silver iPod Nano.
So how did we determine the winner of the iPod Nano?
I have a list of all those who were elgible to win in an excel spreadsheet. I assigned a random number to each entry then sorted the list based on that random number. Once sorted, each entry's random number was recalculated and then resorted. I repeated this process 15 times to properly mix-up all the entries listed.
We then printed out numbers corresponding to the total amount of entries listed, cut them out, and put them into a hat. The Head of My Legal Department (my 7yr old son) then reached into the hat and pulled out one number. The number corresponding to the entry listed in the excel spreadsheet was the winner of the iPod Nano.
Editor's note: drum roll please....
The Winner of the 4GB Silver iPod Nano (donated by Cory Reinert at Insight.com) is.....
Karen L. from Wisconsin!
Thank you Karen for your donation. Once I get your contact info, your iPod will be on its way.
And now for the drawing for two signed copies of Patricia Minor's book: "What Life Is Like Living With OI"
I repeated the same process for the drawing of the books as I did for the iPod Nano. Everyone who left a comment was eligble to win a book. Also eligble were those in the OI community who sent me their story. I took all of those names into excel and repeated the same process as I did for the iPod Nano.
The first winner was Su S. and second winner was Stacy G. Thank you both for your contributions and thank you to Patricia Minor for donating the books!
One last thank you to Cory Reinert at Insight.com. If you are in the market for purchasing computers or I.T. related equipment, please give Cory Reinert a call. Mention to him that you heard of his services through the blogathon and he will hook you up with a great deal.
Please leave comments on the blogathon posts! While the 2006 blogathon may be over, all of the posts written during the blogathon will remain on this site for eternity (i.e. a really long time). There is a lot of great content that needs your input. People searching for OI related topics in the future will stumble across the entries and your knowledge will help those seeking to learn more about OI. You can review all the blogathon posts by going to the 2006 Blogathon for OI archives page.
The blogathon donation page is still active, so for those of you who would still like to donate please do so. We are only $225 shy of our $1000 goal, so a donation of any size would be greatly appreciated.
Thanks again to all those who contributed and helped spread the word of this blogathon to others.
Posted on October 01, 2006 at 09:11 AM
Looks like I kind of over shot my 24 hour blogathon and stretched it out by an extra hour. I'm signing off for now but will check back later tonight. For now just a few final notes:
Please donate and help us reach our goal of $1000. Remember, any amount helps and you will be able to donate until 5pm EDT Monday, Oct. 2nd.
A big thank you to all of you who have donatd thus far.
Read through all the past stories if you haven't thus far. You can go to the 2006 Blogathon archive page to read every post.
Comment on posts! There are a lot of stories and articles that need your input. Your knowledge might greatly benefit others in the OI community.
Thank you to those who submitted stories. Everyone, whether or not they have OI, greatly benefitted from them.
Thank you to Cory Reinert at Insight.com for donating the iPod Nano for tomorrow night's drawing. Remember, for every $5 you donate you get a chance to win the iPod.
Thanks to Stuart Tart at the OI Foundation for all your help.
Thanks to all the bloggers who helped publicize this event.
Thanks to my cousin Michelle, her husband Jeff, and their son Ryan who was the main inspiration for this event.
And Finally, Thank you to my wife and son who had to put up with me being on the computer for the last 25 hours. I love you both and thank you for your supoort.
Good night everyone.
Posted on October 01, 2006 at 08:51 AM
This story just came in last night from sharlene whose daughter has OI. Here are her words:
My daughter was born two months prematurely by a Caesarean delivery and she was breech. Her apgar score was zero, dead, a normal apgar score ranges between seven and ten. She made a remarkable turn around and life continued.
At thirteen months when she started to walk, she fell and broke her femur. There was talk of child abuse. She spent two weeks in the hospital in traction, then was put in a hip spika cast, which goes up the chest, down the affected leg, and half way down the other leg, with a bar to help carry her, for those of you who don't know what that is. That stayed on for two months, then once out of that we were told to keep her still for several weeks. But what they have now found out is that you should have not done that. Now a child becomes weight bearing on the fracture as soon as possible. So with our daughter, before doctors knew this, it was a terrible cycle of fracture, traction, casting, and immobility. She fractured the other femur and it was back to the hospital.
This time no one would listen to me, as more people suspected abuse. The tincture of benzoin which is rubbed on before casting worked well the first time. But the second time it caused a severe reaction. The doctors kept telling me things were normal, they were annoyed with me since they suspected child abuse.
The family doctor came in and told them it was probably an allergic reaction, so they uncovered her legs, and her heals were in terrible shape. Now the hospital was concerned about a law suit, and I was so disgusted that I wanted her moved immediately and taken to another hospital. But our doctor talked to us and told us we would do more harm by moving her. Then a group of doctors reviewed things and agreed it must be OI. Well, we would later, after the femur healed, take our daughter to a Boston hospital, and they told us to go home, of course she has OI.
Years later we would find out which doctor expected child abuse. And he was covering for our regular doctor on the weekend when our daughter hurt her leg, we were not sure what was wrong, as she was braced at the time. But this doctor insisted on taking the brace off, where our regular doctor would not do that. I took it off very carefully, but the doctor called me outside the room to look at the x-ray, as he could not find anything wrong. While I was out there, the nurse put the brace back on and our daughter screamed. Next week, when our regular doctor took an x-ray of the leg, he found she had a complete fracture. She had a "green stick" fracture, but the force of putting the brace on turned it into a complete fracture. We had a few tough years.
Having OI and entering shcool was a problem as the small town we lived in had never seen a child with any disability, especially OI. But she attended grade school with an aide, who followed her to middle school. We then moved out of state and she enrolled in a larger high school, which had seen many different health problems, so her OI was no big deal there, and she went to school like a "normal" child.
For those who don't know medically what to look for, you would not know my daughter has OI. She is of the milder group, though all her fractures have been to the larger bones. One leg is a bit shorter, where all but one fracture have happened, so she needs to use a lift. That was tough during teen years. If she does not wear the lift, she will have back problems. She exercises intensly, but now has some problems with muscles. Collogen, which makes the bones strong, is also in other parts of the body, so when you work one area, another area may become affected.
So I hope this might help someone, or inform someone. And I hope the blogathon goes well. And for all you OI affected people, if you have not attended an OI Conference, go to the next one in Crystal City, Virginia, which is minutes away from Washington, D.C. and the date is August 1 - 3, 2008.
Thank your Sharlene for sharing your story.
Posted on October 01, 2006 at 08:41 AM
My cousin Michelle and her husband went to their very first National OI conference this summer which was held in Omaha. I asked her to write down her thoughts on what they experienced in order to possibly persuade others who might be undecided on making the trek to Virginia in 2008.
Here is what she said:
Our trip to Omaha was a real eye opener. This was the first OI Conference we have attended. I highly suggest going, if possible. We received so much information that we never did think of and met with other OI parents who told their stories. It was very emotional.
We decided not to bring Ryan, not knowing what to expect. We wanted to learn anything & everything, but we missed having him there. I suggest bringing your kids. They have trained caretakers there or you can bring your kids into the sessions with you. It is a very relaxed atmosphere, and you can pick & choose the sessions you want to attend.
A couple of things we learned in which we never thought of was: Who was going to take care of Ryan if something happened to us, God forbid. Financially, most children are under some type of medicaid/social security and the money part has a lot to do with it. All of our assets/belongings could not go to him. For Ryan, any assets above $2,000 would make him ineligible for his insurance.
Also, we needed to make sure whomever was to take him would be physically & emotionally ready to do so. It is a huge decision, but should be done right away. We learned that children have IEP's when they go to school or some type of written document stating from how to treat and take care of them, what they can & cannot do during school and any special needs that they have during school, i.e. riding the school bus, therapy during school, going to the bathroom, gym class, recess, etc... So many things that people take for granted.
During the IEP class we found out that there are people who advocate for your children's needs and specialize in helping parents get what their child needs at school. We attended a peer to peer group for parents with children going to school and we found that very informative. They told us their experiences and what they have done. It is so much better to hear from people who deal with it than the text book version. Throughout the whole conference people were willing to share their life story. It is so much better to hear it in person than on the Internet where you cannot see the emotion.
Attending the conference is somewhat expensive, but if you start saving for it ahead of time it is well worth it. Most states offer funding for people to attend these types of events.
If you would like share your National OI Conference experience as well, please do so in the comments section.
Posted on October 01, 2006 at 08:25 AM
Peter submitted this story to blogathon and it tells about his journey's and fight with and final acceptance of his OI. Here are his words:
I have OI type 1, that is the mildest form of OI and I was the first person in my family to have it! My family had been screwed up for years, but my having OI sent them really over the edge. Or, at least, I was the excuse.
It took me a long time to accept that I had OI. I've always been a good swimmer, so I swam that famous river in Egypt "De Nial" for years. While I made things worse for my body, I did have a lot of adventures that I'm glad I had. If I'd behaved in a "responsible" manner, my body might be in better shape today, but I wouldn't have traveled by myself to Mexico and Central America, learned to run heavy equipment like bulldozers and front-end loaders, repair cars, fall trees, do
construction work, even lay out and build a road. I learned to trap fur-bearing animals, too.
Pretty odd-ball stuff, yes.
While some of it wasn't adaptive to living in the urban world, I gained a great deal of confidence and competence. Even now, twenty years after I had to stop living like that, out in the boonies, I look back on it with wonder and have some happy memories. There are painful memories, too, where I got too far into self-medication (and went into a downward tailspin that almost ended in self-destruction). But, that was what it took; like the saying goes, it takes what it takes. We all do the best we can, I believe, at the time.
It's easy to forget physical pain when the memories are otherwise good. That is, until the pain comes back. It does. Even so, the memories stay good, most of the time. I wouldn't give them up for anything.
Posted on October 01, 2006 at 08:14 AM
It seems as though the donations have stagnated at the 51% mark and we are about $490 short of the $1000 goal. I would like to thank all of those people who have donated thus far and encourage anyone who hasn't yet to give whatever you can. $5, $10, or $15, any amount is appreciated.
If you are "on the fence" whether or not you should donate, just remember that for every $5 you give you get a chance to win the iPod Nano (graciously donated by Cory Reinert at Insight.com) I'm just dying to give away tomorrow night.
Remember, you will have the opportunity to donate all the way until Monday at 5pm EDT when the donation page will close and we will start the drawing for the iPod Nano.
Thanks for all your support.
Posted on October 01, 2006 at 07:55 AM
It's not me, it's getting light outside.
Good morning sleepy heads! Welcome back. Did you sleep well last night? Me, not so much.
To catch up on what you might have missed be sure to go to the 2006 Blogathon Archive page. There you will find one page that lists every single blogathon post in its entirety.
Posted on October 01, 2006 at 07:15 AM
I asked my cousin Michelle, whose son Ryan has OI, to put together a few tips about caring for an OI child. I told her to write about things that she knows now, but wish she knew (or wished someone had told her) when Ryan was just a baby. OI is a scary thing, especially if you are parents for the first time, so here are some helpful tips from Michelle.
The first initial thing that we did when we found out Ryan had OI was to write down the words "Osteogenesis Imperfecta". Unless you are familiar with it, it isn't an easy term to remember. My aunt typed in OI and printed out info for my parents. They found in the literature, that egg crate foam in the car seat is very beneficial. A 5lb baby doesn't exactly fit well in a car seat, not to mention a fragile baby.
We cut out pieces from the foam pad and put it in the corners of the car seat and on each side of his head. When we came home we also put egg crate foam in the bassinet and he still has it in his crib today. The egg crate makes it more comfortable and evenly distributes his weight.
Years ago, parents were told not to hold their children. Today, it is the most recommended thing. Children need to feel loved.
To transport Ryan as a baby, we were told to make a base of egg crate foam rubber and put it into a pillowcase. An actual pillow will work just as well if you don't have access to any foam rubber.
We had received so many cute clothes before Ryan was born, but most of them he couldn't wear. We found the best clothes for little babies is a button down or zipper type outfit. You don't want to be cramming their legs or arms into the outfit, which could possibly cause a fracture. Ryan was not able to hold his head or sit up, so we bathed him with a sponge on the bottom of the tub with just a little bit of water. We tried baby bath seats, but it was difficult as he was unable to sit up.
Another thing we had to be aware of was his head shape. Ryan's head was very soft from the start of his forehead, through the whole top of his head, and down the back of his head. If a child spends to much time on one side of his head it begins to take that shape. So we had to be constantly repositioning him using receiving blankets to prop him up.
Some kids get helmets that help with the shaping of their head. (You can check out helmets on Jonathan's web site listed below)
I feel very strongly that I know what is best for my child and I have the right to tell the Doctors "No, you can't do that with him." When dealing with medical staff, be sure to ask any & every question. For example: we were told that taking a blood pressure reading might fracture his
arm. The band that goes around the arm could get too tight and possibly fracture the arm.
My next subject is therapy. The first week we had Ryan home, we had people calling to set up appointments for therapy. The hospital contacts the county you live in and they set up the initial appointment with a group of therapists to see what your needs are.
In our county, it is called the Birth to 3 program. They provide services from the birth of your child all of the way until he/she is 3 years of age. Right now Ryan receives Physical therapy twice a week, Occupational therapy once a month, and speech therapy once every other week. This is a lot of therapy to manage.
Though the absolute best therapy for an OI child is water therapy. Water therapy is the best therapy of all because the risk of fracture is very low. A lot of kids learn their first steps in the water. I have to say the therapy we receive is great. I never did think I would see the day that Ryan would hold his head up, sit up by himself, backwards butt scoot, forward butt scoot, and most recently pushing up on hands and knees. Not to mention a little bit of crawling. Every little step is a huge accomplishment and I cannot emphasize how important physical therapy for an OI child is.
Another important step in our life has been pamidronate treatment. Pamidronate makes the bones harder. It takes the osteoclasts and stops them from taking away the old bone and keeps the osteoblast which build new bone. For awhile there Ryan was breaking every two months, but since the pamidronate treatment we have encountered a couple minor breaks/microfractures. I call it the miracle drug.
Changing diapers is different from a normal child. Never pick up from the legs. You should lift from under the butt and slide the diaper under. You also should never pick up a child from under the arms. It could cause a break in the arm/should area and even in the rib cage. We picked up Ryan for a long time by putting one hand under the head/neck area and the other hand behind his back/bottom area and picked him up as a unit.
OIparents@yahoogroups.com is the best on-line group for new parents and parents of young children. It was started by a Mother and Grandmother of a child that has OI. You can get on the list by contacting firstname.lastname@example.org. You can read their story by going to Jonathan's web site listed here http://ceciliaykerstiens.tripod.com/babyjonathan/index.html. The site contains a lot of great newborn tips.
Thanks Michelle for all the information. If you have something you would like to add to Michelle's list, feel free to leave it in the comments below.
Posted on October 01, 2006 at 06:30 AM
I'm going to hold off on the drawing for the two signed copies of Patricia Minor's Book "What Life Is Like Living With OI" until Monday night . I've posted a lot of information here over the last 12 hours and would like to give as many people as possible the chance to win a copy of her book. I will announce the winners Monday night at the same time I make the announcement of the iPod Nano winner.
To be eligible for the book drawing, all you have to do is leave a comment on one of the blogathon posts. There are quite a few posts asking for you input and knowledge, and also a lot of great stories as well. I'm sure the authors of those stories would love to hear your feedback.
To review all of today's posts, the 2006 Blogathon archive is available for your use. It is one page that has every single post listed in it's entirety.
Also, if you would like to checkout Patricia's book on Amazon.com, just click on her book's cover in the right side bar.
Posted on October 01, 2006 at 05:55 AM
By Gregory Banks.
Literally translated, I think it says "Imperfect bone growth." But what else does it say?
Does it tell you my name? Does it give you insight into the life I’ve led? Can you define the nature of a person by the affliction he has? People look at you from afar, and sometimes very near, and focus their attention upon you as if your ailments are blindness and stupidity instead. They gawk and point, their blatant mannerisms and their subdued words issued on whispering lips screaming "Look at the freak!" at the top of voiceless lungs. It doesn’t matter to them whether you’re healthy and happy, loving and kind. Your body’s short, your chest a barrel, your bones like ancient china too delicate to touch. In their eyes you’re an oddity, a living, breathing museum piece right out of "Ripley’s Believe It Or Not."
But you are human, actual and whole. You remind yourself that you came into this world like any other child. Love is your purpose. Living is your right. You should be defined not by others, but by how you live life. You take and you give, you fall and then you rise. You appreciate the world with all encompassing eyes. But in the still of the night, as you lie quiet and alone, the very weight of Creation aches deep within your bones. Although you deny it, you know it to be true. Like Pinocchio, the desire to be "real" is ever part of you.
Thank you Gregory for your words.
Posted on October 01, 2006 at 04:45 AM
This next story was submitted by Marelise Prinsloo, who lives with OI, and is a writer for Audacity Magazine.com
"Living with OI" is something I didn’t thing about a lot while I was growing up. I am the only one in the family who has it, in my entire family ancestry there hasn’t been another like me. It seems even here, where I live, I am the only one. I never talked about "OI", my mother would just say "brittle bones" when I was little and try to explain to others. I grew up mostly thinking I was just like everyone else. I knew there were things my friends could do that I couldn’t, but that wasn’t such a big deal. It was only when I was grade 8 that it was clear I was disable and very much not like the normal people around me. That year my parents decided it would be best I attend a special school when I went to high school, since they figured I wouldn’t fit in with a normal high school. The decision proved to be disastrous, I finished one year in the special school and then went back to a normal high school. The problem with the special school was that the children there were too different than anything I had ever experienced.
I was brought up to be independent, to be ambitious and to work hard. The disabled children in that school failed year after year, even though the educational standards were way below average. They had no ambitions; they knew there was nothing waiting for them out there. When I attended that school, I didn’t just have OI, I was disabled. After that year, it took a while for my self-image to recover. I had to remind myself that I’m not like those kids, who are afraid to go outside, to confront normal people.
It has been a while since that year; I am now a qualified graphic designer and illustrator. I have a wonderful boyfriend and a good, normal life. I have OI, yes, but I am not disabled. I am in a wheelchair, yes, but I am not disabled. Disabled people are those who I left behind at that school. Hiding behind walls, afraid of what the world might do or say.
As I grew older, I wanted to find those who are like me. I found many of them through the internet and some of my good friends I found because of an online magazine called Audacity Magazine. For the first time in my life I spoke to people who were almost exactly like me, but living on the other side of the world. I became a contributing writer for the magazine and could express thoughts and emotions I had been having with thousands of other people. I realised I was not alone in this world; other people have the same fears and experiences as I do. I am not normal, but I am not disabled. I am somewhere in the middle, between two very different worlds.
In my country, Apartheid ruined lives by keeping different cultures apart by force and discrimination. The Struggle overcame in the end, but people are still putting the pieces of their lives together. Between the normal and non-normal worlds there is a different kind of apartheid, not upheld by force, but by socially indoctrinated beliefs. Beliefs that is peaceful in nature, but just as destructive. OI is just something that I have. Yes, it makes me different and sometimes I wonder how things would have been had I not had it. But it is the stigma of being disabled that I have had to struggle with.
Thank you Marelise for sharing your story.
Posted on October 01, 2006 at 04:14 AM
October 1st marks the start of Breast Cancer Awareness Month. Breast cancer is a disease, like OI, which currently does not have a cure. Our sister's in blogging over at a site called www.boobiethon.com are holding their 5th annual "Boobie-thon" where they encourage both women AND men to send in pictures of their covered and uncovered breasts to raise money for Breast Cancer research.
Here is some info from their press release:
Boobies. Although they come in all shapes and sizes (large, small, saggy and perky), they have one thing in common: The ability to develop cancer.
Even though there is no cure yet, the fifth annual Blogger Boobie-Thon is doing its part to make cancer a thing of the past.
From October 1-7, bloggers from across the globe can submit pictures of bare and covered breasts to raise money for breast cancer causes.
Founded in 2002 by Florida blogger Robyn Pollman (www.shutterblog.com,) the Boobie-Thon has grown into a well-known event, raising over $26,000 for breast cancer and blogger-charity causes, with over 1500 people contributing pictures. The event raised $9240 between October 1-8, 2005, with $1355 going to a secondary charity: The American Red Cross Hurricane Katrina Fund. The rest of the donations were donated to the Susan G. Komen Breast Cancer Foundation.
So if you get a chance, check out their site, and maybe consider donating (in whatever way you see fit) to their cause.
I think we owe it to the women in our lives to help put a stop to breast cancer. And now, back to our regularly scheduled blogathon for OI.
Posted on October 01, 2006 at 03:59 AM
Rick has type 3 OI and loves to watch live auto racing. He was kind enough to share a bit of his life with us:
I turn 50 years old in two months. I have yet to meet anyone with OI "3" at this age. Never did I imagine to be here still. I owe most of why I am here to my mom and my intense desire to be around Auto Racing. I watch and attend racing events almost every week. I have been to 56 racetracks across the US and Canada.
Without my desire to get to the racetrack... to see cars..to meet people, I am not sure I would have fought so hard to regain my health after so many operations and fractures.
All my life I have been going to racetracks. Ninety-nine and nine/tenths of the time I am by myself. I used to invite people, mostly woman to come with me.. but now I only do once that in a while.
Formula One cars have been a goal of mine since I was sixteen years old. My Mom had been getting noticeably more and more nervous every-time I went away far to an event. When my sister became sick in 2002 I put-off going to the race. Them my Mom became sick a bit later and I forgot all about this goal.
In 2005 both my Mother and Sister passed away. My sister, who also had OI died from we believe a blood clot from a broken bone. My Mom developed Alzheimers late in 2002, and passed 7 months after my sister Karen.
No longer worried how my Mom would feel about my trip I began making plans for Canada. During the trip to Montreal, Canada I was a bit nervous. Over 600 miles of driving and across the border. I was headed for the Canadian Grand Prix at Circuit Gilles Villaneauve.
This picture is of me in one of the Wheelchair areas of the track. Formula One racing is special when you see how badly disabled or handicapped a lot of the spectators were in that section. I go to a ton of Nextel Cup races and hardly ever see a spectator that can't wheel themselves. I sat next to three people who had oxygen and a man who had Cerebral Palsy and was Blind.
I was one of the luckiest people in the bleachers that day!
I had a super time and felt for the whole time so free from discomfort. It is these "Days" that keep my life so special.
Thank you Rick for sharing your story with us.
Posted on October 01, 2006 at 03:34 AM
We've been mainly focusing on the OI Foundation and the work they do throughout this entire blogathon. But now I'd like to take a chance and ask you to submit other OI related charities. Here are two that I've found:
The Miracle Michael Fund - The Miracle Michael Fund golf outing is held annually in memory of Michael John Shultz. “Miracle Michael” was born with severe OI and bravely battled complications from this disorder throughout his eight months of life. Despite more than 100 fractures, Michael’s smile stands as a symbol of how powerful the human spirit can be, despite the obstacles we are facing.
The Tiny Bones Fund - A tax-deductible donation to the Tiny Bones Fund can be made in two different ways. You can mail checks or money orders payable to: University of Nebraska Foundation to 8712 W Dodge Road, Suite 100, Omaha, NE, USA 68114.
Please include a note stating that your donation is for the Tiny Bones Fund. Or you can call 402-595-2302 to make a credit card donation (7:30am to 5pm CST). Funds will be used to cover costs of transportation, treatments and surgeries, research and teaching.
Any others? Please submit your favorite OI related charity or benefit in the comments below.
Posted on October 01, 2006 at 03:01 AM
Omaha is lucky to have two world class medical facilities at it's disposal. And it may be suprising to some, but it is home to some of the best doctors and state-of-the-art equipment when it comes to OI. I contacted Dr. Horacio Plotkin, who is Assistant Professor of Pediatrics and Orthopedic Surgery at the University of Nebraska Medical Center and Medical Director for Metabolic Bone Diseases Clinic at Children’s Hospital, and asked him to tell the story of how he became involed with OI. Here are his words:
My relationship with OI started almost 20 years ago, when I was rotating by neonatology as part of my pediatric residency. A child with extremely severe OI was born, and there was nothing we could do to help him. He passed away a few hours later. I’ve realized then that I had a dream, and that was to help children with OI. That lead me to avidly read any article I could about pediatric bone diseases. Including rickets that unfortunately is very common in South America.
When residency was over, a fellowship in Pediatric Endocrinology at the National Pediatric Hospital of Buenos Aires followed. There, Dr. Hernan Mendilaharzu, an "old-fashioned" doctor with an incredible clinical experience, guided my first steps in the amazing field of hormones and receptors.
In 1993, the Metabolic Research Institute of Buenos Aires was searching for a pediatric endocrinologist, to conduct a research program. The aim was to find normal values for bone density in young population. I got the job, and the result was a three year fellowship, during which I have published seven papers, and made 30 presentations at scientific meetings.
I also became a member of the Pediatric Working Group Committee of the American Society of Bone and Mineral Research (which I chaired in 2000). The fellowship included a three-month rotation in the Shriners Hospital in Canada. While in Canada, I was invited by Dr. Andrew Stewart to coordinate a clinical research project at Yale University School of Medicine, in Connecticut. The subject was Use of Parathyroid Hormone Related Protein (PTHrP) for the Treatment of Postmenopausal Osteoporosis. A little far away from the children that I was used to work with, but still a great experience, working with one of the foremost authorities in the field of Endocrinology.
As a part of our work together, we wrote a chapter for a book about Clinical Endocrinology, and published the results of our research. In August, 1997 I arrived in Montreal on a warm sunny day. It was not a reflection of the crude winter that would come later. But the warm people of Montreal made it nice to be there, even in the middle of the worst snow storm. My main project at the Shriners was related to the treatment of children affected with severe osteogenesis imperfecta using a new bisphosphonate, alendronate. The study included 15 Shriners Hospitals in USA and Canada.
I have also been involved in the treatment of infants and children with pamidronate, another bisphosphonate, and in the follow-up of children with different metabolic diseases of the bones. In June 2002, I started in a new position at the University of Nebraska Medical Center and the Children's Hospital of Omaha, Nebraska. These institutions, with state-of-the-art technology and incredible personnel, are amongst the best in the world. We have started the OI and metabolic bone diseases clinics.
The multi-disciplinary approach is the basis for the clinics, including OT, PT, orthopedic surgery, social worker, audiology, nutritionist, psychologist, amongst others. I am now Assistant Professor of the University Of Nebraska School of Medicine and Director of the Metabolic Bone Diseases clinic at Children's Hospital. We have children coming from 27 states in the USA, and places as far as Mexico, Spain and Romania to seek treatment and evaluation with us.
I have written 6 chapters in books and published 46 articles related to my field of study. We have developed a low-dose protocol for the use of pamidronate, with very promising results. I have also published a new classification of OI and related disorders, as I feel that the classic classification in 4 types underscores the complexity of this condition.
After many years reading about osteogenesis imperfecta (and the lack of an effective treatment for it), I am very proud to be part of this amazing adventure of helping children, relieving their pain, increasing their independency and physical activity, and drawing smiles on their families. They came to Omaha and find a friendly team, working together, with the simple aim of making those children a little bit happier, every day.
Thank you Dr. Plotkin. It is truly amazing that we have such talented professioanls right here in our community. If you would like to read more about Dr. Plotkin and the work he does, check out his website www.geocities.com/dr_plotkin/.
Posted on October 01, 2006 at 02:21 AM
Amelia has type 3 OI and was kind enough to send us her words of determination:
My name is Amelia and I have type 3 OI. I have had hundreds of fractures in my life and many of surgeries. When I was in grade 7, I had a brain tumor the size of a hardball removed from my head. Just when I thought it was gone for good, it came back again the summer after grade nine. Since then I have had cancer treatments to make sure it won't come back.
These events have had a big effect on me, but in no way have slowed me down in reaching my goals. After I graduate, I'm going to go to University to become an Astronomer. One day, I'm going to discover something great, and nothing is going to stop me.
Thank you Amelia
Posted on October 01, 2006 at 01:09 AM
If you recall from an earlier post I had mentioned that had I won tonight's $15 million jackpot I would give 10% to the OI Foundation. Well I hate to be the bearer of bad news, but this blog will have to go to work on Monday.
Here are tonight's winning powerball numbers:
6 15 30 32 39 and the powerball was 5.
Compare them with my numbers:
Someone out there actually did win tonight, as it happens this is the third winner in as many drawings. Well, at least we tried.
Posted on September 30, 2006 at 10:00 PM
Earlier we heard from her Mother Su, now we hear directly from Kara. If her story doesn't inspire you to do more with what you have, nothing will. Here are her words:
Osteogenesis Imperfecta (O.I.) is not only the medical label for my bone condition, but also an explanation of an important component of my personality. Of course, this has affected the way I've experienced nearly every event in my life. One of the many gifts of unique insight that O.I. has bestowed upon me is a changing perspective of my body and identification as a person with this bone condition. For much of my childhood, I took the stance to "overcome" my, at times, fragile state. I strived to achieve my goals "despite" my body.
Even before I became immersed in a community of other people with disability, I began to change my interpretation of my disability as differences in functioning, not necessarily being inferior in comparison to the way others performed their daily tasks. It's interesting to look back upon my early public speaking experiences. I can now see a changing pattern as I went from listing the many things I could do that were surprising in relation to my diagnosis to providing education on how I lived life in much the same way as those in my audience with a few adaptations and alternative approaches.
I entered college with this attitude: While I was different, I was an equal individual and just went about life in a different way. It was then that I began to learn about the history of people with disabilities. I found my place within both the able-bodied world and within the disability culture. I began to see my strengths as a person with a disability and realized that many of the things that I cherished in life may have been accomplished in part BECAUSE of the repercussions caused by my abnormal bone structure.
My identification with my specific disability became even stronger as I pursed an adapted swimming career throughout college. While many of us seem to really enjoy the activity and freedom of the water, I was often the only person with O.I. at disability swim meets. As I excelled within my disability classification, it became a strange reality that my body was performing better than others, even others with different disabilities! At times, it was frightening to rely on a body that had at best been unpredictable for most of my life.
As I trained harder, I asked more from my body and it responded. It’s been essential for me to build a mind-body relationship with myself and my disability. My swim times got faster, I moved up in rankings, and began to set American and World records. In 2004, I was selected for my first international team, the 2004 Paralympic swim team. I was the only member of Team USA, which included over 400 athletes from all the summer sports, with Osteogenesis Imperfecta. Sometimes the focus of interviews was distracted from my athletic abilities or performance by the nature of my condition. In many ways, it's difficult for people to imagine. It tests our beliefs about what our society defines as strength. Still, being a person with O.I. definitely became a great source of pride for me at this time.
While I remain proud of my specific disability and the traits it has contributed to my personality, I've also discovered other aspects of disclosure as I've entered the professional world. There's no question that discrimination exists within the employment spectrum for people with disabilities. I clearly can't disguise the fact that I'm in a wheelchair throughout an interview, but I've faced the reality that I often need to neutralize my disability references in my resume to even get the chance at an interview.
The nature of O.I. also makes employers nervous. True, their fears are generally ridiculous and based on ignorance. As people with O.I., unfortunately, we rarely have the chance to combat these overreactions before employment decisions are based on these judgments. For this reason, I sometimes remain a little elusive as to the exact name/nature of my disability in certain employment situations. I draw the line at providing false information related to my condition and if directly asked in an appropriate manner, I would most certainly answer honestly. So for now, as a young professional, I'll continue making use of the awkward tendency of people to assume rather than to ask.
My feelings related to my bone condition have changed throughout the years just as the shapes, lengths, and strengths of my bones have altered. I've embraced different identities and have enjoyed the support, guidance, and mentorship of people both with and without disabilities who have found a way to love me and my bones.
If you'd like to learn more about me, feel free to reach me at my web site: www.karaswims.com It’s long overdue for an update, but I feel the motivation coming for that as we speak.
There are pictures from my Paralympic experience and archived blogs I wrote during training and competitions. I contribute to Audacity magazine between working on my Ph.D. in clinical psychology and serving as Strategic Planner for the National Youth Leadership Network. If you are a youth (age 17-28) with a disability, come check it out.
Thank you so much for your inspirational words Kara.
Posted on September 30, 2006 at 09:35 PM
Good friends, good food, and good drink. On with the blogathon.
Posted on September 30, 2006 at 09:05 PM
Got a call from some friends to come over and watch some football for a bit, which will be a nice opportunity to get out of the house (yes, I have showered today). They have wireless internet, so while I may be out of the JoeSchmidt.com world headquarters and watching some football, I will keep the updates on this site rolling and spreading the word of the OI blogathon to others.
I will post an update after the move. Until then...
Posted on September 30, 2006 at 07:21 PM
Su is the mother of two children, Kara and Nick, of which Kara has OI. This story truly goes to show that you can do anything you put your mind to. Here are Su's words:
"Disability is not a brave struggle or courage in the face of adversity... disability is an ART, an ingenious way of life." Neil Marcus
I am a parent of a daughter with Osteogenesis Imperfecta, ( O.I.) a name new to me in the coldest winter of January 1980. Kara was the chosen name for nearly seven and one half pounds of more than flesh and bone. Kara was talking and singing to me in our farmhouse kitchen a little over one year of age. I felt so blessed to be in charge of this child. We had many animals on the small farm along with plenty of work. Her love for animals was only countered when her brother, Nick, arrived to be the best friend in her life. Kara was two when Nick was born into our lives. Like twins, Kara and Nick have a precious relationship developed by a unique deep understanding of each other's identity. Each winter since that cold January has been warmer and more meaningful. In one mind set, both of my children were born into O.I.
My daughter Kara was born with several fractures and she created quite a stir in our small capital city as not one doctor knew very much about this rare bone condition. Knowledge is power, so I went outside of the community to Colorado to learn first hand from those who were doing research on O.I. Monies for research were cut off by a conservative administration in Washington before I could get most of the test results, and that began my quest for the "battle of the barriers" for Kara.
I battled for health care as my employment brought my resignation to the hospital when Kara was in traction. This would leave me without insurance. (My employer said I had missed too much work taking care of Kara. ) I battled for her education where she would be mainstreamed in regular classroom. Kara and I spoke to church groups, city clubs and through our United Way of Kentucky to educate our community about O.I.
Soon the battles became a positive force toward understanding. I took Kara to Shriner's Hospital for the best health care possible along with adding group insurance from the public school where I work. Our city cut curbs and added ramps to make the city accessible to everyone. Our school called on me to work with families to present the best education for our special needs children.
Kara had a very interesting education. I recall once when her friends and the families of our community supported our quest to add an elevator to the high school. You see, Kara walked to receive her first communion and even in her 6th grade graduation. But, Kara has taught me that walking can be overrated. It is necessary at times to understand that how you get around is not as important as what you do when you get around.
Kara uses a wheel chair more than her walker which she uses inside her apartment. This is acceptance. Acceptance is constantly fine tuned with each one of our lives and O.I. In the fall of Kara's senior year of high school Nick was a freshman playing first string varsity football and Kara was in the homecoming court. I had invited the grandparents to the game and just before the announcement of Homecoming Queen, I asked my father. "Do you think Kara is the queen?" I will never forget his answer. He smiled and said, "Who else would they consider ?" Kara rolled, not walked to receive her crown and flowers. Who else? Yes, Kara has O.I. but both Kara and Nick are athletic. Kara was racing in her chair in middle school.
I walked beside her and when I could no longer keep up, Nick ran beside her in the races. Kara began to train in swimming and competed in college in adaptive sports. Kara was chosen by Team USA to train and compete in the 2004 Paralympics in Athens's Greece. The entire family cheered as Kara swam representing the United States in Greece.
As you can see, Kara is a positive force that challenges barriers in our society. Kara chose to attend Wright State University in Dayton, Ohio. Nearly two and one half hours away from home, she graduated and now is working toward her doctorate in clinical psychology in Nova Southeastern in Florida.
Kara is nearly two days away from home by car now but Nick, Kara and I manage to fly back and forth to visit and I look forward to every minute we can spend together.
Keeping it real, we have had some very humorous experiences with O.I. The kind grocery clerks want to help me as I had to push the chair many, many trips to the local grocery. Some would pick up the chair before I could give instructions. They would pick up wheels first and both chair and clerk would take a nasty spin. Trips to watch her brother perform as an athlete would challenge us to using large orange pumpkin trash bags to cover Kara and the chair to protect her from the rain. We had to just laugh it off; we figured some persons would stare anyway.
Once after a day of open eye stares, Kara told some children at the Cincinnati Zoo that were staring at her, "This is what happens to you if you don't drink your milk." (We had already explained about her condition about seven times) Kara got stuck in a metal beaded wall of a children's museum in Atlanta when she just "wanted to go through like everyone else." It took us about 20 minutes to untangle the metal from her chair.
Nick, Kara and I spent the long night in an emergency room on New Year's Eve one year. Kara had two fractures from a fall from her chair. All night we were entertained by the long lines of drunks and prisoners who were in the emergency room with us.
Fractures of the bones have never fractured the courage it takes to live in our society as a person with a disability. O.I. is a part of Kara and a part of us and we accept it. The acceptance of O.I. is fuel for demanding high standards of dignity, life, liberty and opportunity in our society.
No Pity HERE. Disability is an truly an ART and an ingenious way of life.
What an inspiring story. Thank you Su for your submission.
Posted on September 30, 2006 at 06:47 PM
Sending a child to school for the first time is tough enough, now imagine sending a child with OI to school for the first time. Lots of precautions need to be taken, one them should be educating the school about OI.
About.com has a list of 5 things teachers need to know about your OI child. The list contains good advice on what educators should know about your child and their OI. The site also has printouts you can download which are various OI related fact sheets.
Posted on September 30, 2006 at 06:16 PM
I thought I would give you, the reader, a few examples on how small the iPod Nano I'm giving away (Thanks to Cory Reinert at Insight.com) really is. It's hard to imagine its size unless you have it in hand. Apple really does a phenomenal job designing their products. Even the packaging is "sexy" (well, as "sexy" as packaging can be, that is)
First the Dimensions:
The iPod Nano is 1.6" wide, 3.5" long, and measure a minute .26" thick. How much does it weigh you ask? A mere 1.41 ounces. But don't let it's small size fool you. Inside it packs a 4GB hard drive, enough to hold 1,000 songs. It has a color display that is 40% brighter than the first generation iPod Nano, and it has a battery life of 24 hours.
Did I mention you could use this as a photo album?
Yes, you can store around 25,000 pictures on this thing. So the next time your want to show someone a picture of your kids, just whip out your iPod Nano.
In fact, the iPod Nano is so light, two Star Wars action figures can hold it up.
Compared with the first iPods that came out. This thing is amazing.
Be sure to donate so you get a chance to win it!
Posted on September 30, 2006 at 05:29 PM
While kids with OI may be fragile, they like to play just as hard as your average kid. Though as a parent you should be concerned about what kind of toys your OI child has. Are there sharp edges, could my son/daughter fall on this toy and possible fracture a bone. All kinds of things need to be evaluated when buying a toy for a child with OI.
So if you are the parent of an OI child, are there any toys you would recommend that are both safe yet fun for your kidlet to play with? Leave your answers in the comments below.
Posted on September 30, 2006 at 05:18 PM
Charity Navigator is a web site that helps you evaluate charities looking for your money. It also looks at the charities efficiency: how much money they receive and how they spend it. It then will rate your charity vs. similar charites so you can judge how it performs. This helps you spend your charity dollars more wisely, allowing you to donate to the charity that best uses its money.
Here is a link so you can research the OI Foundation and see how they handle their money.
Posted on September 30, 2006 at 04:21 PM
Jean is a Mother of 7 children whose son Jake has OI. They are a big family, but they know how to "roll with the punches" that OI delivers. Here are her words:
Our son Jake was born with severe OI. He had several breaks before he was born that healed incorrectly and several new breaks during the birthing process. We have a very large active family (7 kids). Adding a newborn with very brittle bones to this crew was a challenge. The first year he spent several months in the hospital due to respiratory problems. It seemed like every time we picked him up, we broke something, but often did not know where the break was. We just knew he hurt and screamed. We learned early that we would have to deal with the breaks and make them a part of our everyday life, or we would have to change our whole lifestyle.
We did learn to live with OI, we embraced it if you will. We did not let the frequent breaks change what we did. Often we were late for a party or appointment because Jake suffered a break as we were putting his coat on. BUT, we learned to give the pain meds, splint the break, softly load him up and go on with our life. There were times OI was the boss, but the family rolled with the punches.
For the first three years, it was not uncommon for the older kids to come home from school to a note that said, "Jake is in the hospital, pop in a frozen pizza. Love you, MOM" The whole family pitched in and life went on. We did get cell phones so we could always keep in contact with each other. I vividly remember standing in a checkout line on Dec. 23rd and getting THE phone call. "Jake is broke, you need to come home now." I asked to speak to Jake who was 3 years old. I asked him if he was broke a little bit or bad. He told me pretty bad. I asked if he needed to go to the hospital or if he needed Advil or if he needed valium. He told me between sobs that he needed valium and a splint. I judged that it was broke, but not too badly, so stayed in the checkout lane with my precious last minute gifts, and directed Dad to give the meds needed and not move him until I got there to splint him.
Twenty harrowing minutes later I walked through the door to a fairly calm house, splinted a broken arm and dressed for our party. We arrived in our Christmas togs, smiles (though Jake's was a little 'dopey') and great Christmas spirit. This is when I knew we had succeeded in incorporating OI into our family.
Our son still breaks several times a month, but he does not let a broken bone stop him from doing what he wants to do.
Thank you Jean for your story.
Posted on September 30, 2006 at 03:47 PM
We have this clock in the main blogathon command post area that chimes every quarter hour. I haven't figured out yet if this is a good thing or not. You see, every time it chimes, it serves as a reminder that I need to file my next post in the next 15 minutes. If I wasn't so "long-winded" with some of these posts it wouldn't be such a big deal. Oh, there it chimes again, I gotta get cracking.
Methinks it will be coming down off the wall soon.
Update: A reader just asked if our walls are pink. I can confidently say no, It's just the color of the clock bleeding into the image. The JoeSchmidt.com world headquarters is void of anything pink. That might change if our "new hire" happens to be female.
Posted on September 30, 2006 at 03:37 PM
You people are awesome! As of this writing we have generated $385 so far for the OI Foundation. But we are still along way from the $1000 goal. So tell your friends, your friends' friends, or anyone with a pulse to come on over to JoeSchmidt.com and donate to the OI Foundation. Who knows, you could win the Silver 4GB iPod Nano.
A little while ago I added the "donation thermometer" on the right sidebar to track our progress. This doesn't update in real-time so I have to manually update when I get a chance. To see what the current donation amount is click on the thermometer to go to the OI Foundation blogathon page. There you will find the official donation thermomter which DOES update real-time as the money flows in.
Thanks again to all who have donated thus far.
Posted on September 30, 2006 at 03:10 PM
While doing research on OI related topics, I stumbled across Google Alerts. This Google service will monitor developing news stories based on the search terms you specify and email you links to the stories. You can tell Google Alerts to email you links, either once a day, as it happens, or once a week. Very helpful for keeping up-to-date on topics in which you have an interest.
Posted on September 30, 2006 at 02:27 PM
This is a great opportunity for those of you in the OI community to help others. Since I do not have OI, I may not be familiar with all the different groups and on-line discussion sites available to someone with OI or a person who cares for someone with OI.
Yahoo Groups is a great place to start as they have many groups listed for OI. You can check them out by clicking here.
So I am asking your help to compile a list of on-line OI support groups. Leave your submission in the comments below.
Posted on September 30, 2006 at 01:26 PM
This next entry comes from a mother of an OI child who adopted her son without knowing he had OI. She and her husband and truly beautiful people. Here are her words:
I am a parent of a child with OI. My husband & I adopted our son at birth. He is now 19 months old. We were not aware he had OI until his first broken leg.
Two months after his birth is when he had his first break. We didn't even know he had broken anything. He was crying and we took him to emergency care to see what was wrong. He was a premature baby and we thought he just didn't feel good for whatever reason. Maybe an upset stomach.
Well, the horrible nightmare began.
The doctors discovered after a day of being at the hospital that he had a fracture. When we told them that we didn't know what had happened, things turned incredibly horrible for us. They brought in SRS and started questioning us. We couldn't believe what was happening. We would never hurt our child but we were in a situation that we had to prove our innocense.
It was the most hurtful thing that has ever happened to us. The most horrible nightmare that we found ourselves in. To be treated this way when we did nothing wrong.
We had had several people tell us about brittle bones disease and even had done some research for us, so we pushed to have him tested. Sure enough, two months later, the test came back that he does have OI, Type IV.
By God's blessing, our child was never taken away from us. We left the hospital with him. But, we left with bruised hearts that have been so hard to heal.
This is our story and first experience.
He has since broken the same leg. He fell on a toy. We did have a much better experience at the hospital and were treated much kinder because we had proof he has a serious disease.
Thank you for letting me share our story and how it has affected our lives so far.
I am a very protective mother of my children anyway, but I have to really keep an eye on my very active little boy. I know I need to let him live and experience life, but it is so hard to relax with this disease. We adopted our daughter at birth as well. She is almost 6 years old. She also has a serious disease that she was diagnosed with at the age of 15 months old, Diabetes Type I.
You can see that I have my hands very full. We believe God gave these children to us and brought us together so we could care for them & help carry their burdens. They are the sunshine in our lives and we are very blessed.
Thank you Stacy for contributing your story.
Posted on September 30, 2006 at 12:48 PM
Digg.com is a news site read by hundreds of thousands of people. It is unique in that it is a social news site where all entries are submitted by the people. Other readers then see the submissions and give it their vote, or digg as it is known. If a submission gets enough "diggs", it makes it to the front page where it will then be viewed by thousands of people.
You have to be registered on digg to promote stories. So if you are a digg member please vote for my blogathon submission. If you aren't a digg member, register and vote for the story. This is a great way of getting this blogathon in front of as many eyes as possible so we can generate money and awareness for the OI Foundation.
Here is a link to my submission:
Giving this article your "digg" would be a great way to help out our cause.
Posted on September 30, 2006 at 12:08 PM
When it comes to luck, I'm about as unlucky as they come, but last night I was thinking I might be due for some good kharma (you know by hosting this blogathon for OI and everything). So the legal department (my 7 yr old son) and I sat down and picked some numbers for tonight's powerball drawing. If by some chance I were to win the $15 million dollar jackpot, I will donate 10% of my winnings to the OI Foundation.
"Don't you know what the chances of winning the powerball jackpot are???"
Yes, I realize I have about as good of a chance at winning powerball as I do getting hit by a bus driven by an extinct do-do bird on the surface of Pluto. But hey, it's worth a shot.
Here is a picture of tonight's winning powerball ticket:
Check back later tonight to see if we won.
Oh, and don't try to steal these numbers! Their mine : )
Posted on September 30, 2006 at 11:39 AM
I can't go any further without publicly thanking my friend Cory Reinert at Insight.com for donating the iPod Nano for today's event.
I searched far and wide for sponsors to donate items for todays drawing. I emailed people at various companies asking them if they would consider donating something. In an act of desparation I even sent an email to Steve Jobs (CEO of Apple) himself asking for help, but no response (though I am not suprised). Cory was the only person willing to help. The OI Foundation and myself give him our heart felt thanks.
Cory is a Strategic Account Executive (read: sales rep) at Insight.com and has 15 years experience selling I.T. equipment. By day, this blog is an IT guy at an architecture firm here in Omaha and I use Cory and Insight.com for all my computer and IT related purchases. Cory's team at Insight.com is very knowledgeable and can offer assistance in virtually every aspect of IT. Whether you need to buy something small, (ethernet cables, usb thumb drivers, or toner), or something large (new office computers, servers, or a $250,000 fiber channel SAN), Cory is your man. Just tell him you know me, JoeSchmidt.com, and he will give you a great deal. He will save you money!
So whether you need to buy a computer for your home, or need to find a great sales rep to buy IT equipment for your business, please consider Cory and the services he provides. Even if you aren't in the market to buy anything, drop him a note of thanks for helping us out with the blogathon.
You can reach Cory via email at email@example.com or give him a call at 1-800-859-5808.
Thanks again Cory, we really appreciate it.
Posted on September 30, 2006 at 11:09 AM
Goodsearch is web page that will donate one cent to the charity of your choosing for every web search you perform through their website. The search is powered by Yahoo!. Many charities are listed and if you don't see yours listed, you can add it.
For example, if you want your searches to benefit OI, just simply type Osteogenesis Imperfecta in the goodsearch box in the middle of the page. Goodsearch will find your charity, if not it will ask you to type it again or possibly add it. Once your charity is added, you can click on the amount raised button to see how much money was raised for your charity.
Here is what has been generated thus far for the OI Foundation through GoodSearch:
They also provide a toolbar you can download and integrate into your web browser to make using Goodsearch more easy.
If I had been GoodSearching instead of Googling, I would have raised $63.57 for OI last year. I am going to have to rethink my search methods.
Posted on September 30, 2006 at 10:40 AM
Just checked the donation page on the OI Foundation website and we are already up to $185. Thanks to all who have donated.
I'm adding a direct link to the donation form on the right side bar, so it will be easier for people to donate. Don't know why I didn't do this earlier.
Posted on September 30, 2006 at 10:19 AM
As I mentioned earlier, I had asked those in the OI community to send me their stories to post during the blogathon. This is the first one I received and it is from Kristal, a young woman who recently graduated High School last spring. Here are her words:
Please allow me to introduce myself. My name is Kristal Nemeroff and I am eighteen years old. I have a story to share with you about overcoming a genetic brittle bone disease called Osteogenesis Imperfecta. Surprisingly, more people have heard of less common diseases like Progeria then Osteogenesis Imperfecta (OI). OI is a physical disease that affects one person in every 20,000 - 30,000 people.
My family knew that I was going to have OI since I was in utero. During an ultrasound, doctors discovered that I had a fractured right femur a few months into my mother's pregnancy. Upon this discovery, when my mom was six months pregnant, the doctors took her and my father into a room and asked them if they wanted to terminate the pregnancy. My parents were so appalled that they walked out of that hospital and never went back again! I could not be more thankful of my parents' fearless decision to raise an OI child.
Appropriately, they named me Kristal. My Mom chose this name because crystals are usually fragile, just like my bones. She didn't like the "cry" in crystal and she changed the first three letters. I see now why she changed them. I grew up with lots of fractures, lots of surgeries, and lots of casts, but never grew up with self-pity. In fact, I was taught from my Nana at a very young age that "self-pity stinks!" I had my first fracture when I was six weeks old. I broke my left femur and was put into a tiny spica cast to heal. Throughout my short lifetime, I have had approximately 10 surgeries and 25 broken bones. I have broken my femurs and fibulas many times. I've also broken my arms, vertebrae, ribs, fingers, and toes before. When I was young I would break ribs from something as simple as a bad case of the hiccups!
OI bones can bow outward due to gravity but I am amazingly 4' 6'' tall, which is pretty incredible for someone with OI. I am in a research study at the National Institutes of Health who study OI children from infancy to adulthood. It has been over a year since my last fracture and this has been a huge accomplishment for me. Every single break and surgery just makes me stronger, although it is a scary experience. During each surgery, I have to get my femur broken (if it isn't broken already) and re-rodded. I have metal rods placed in the center of my femurs to give them stability so that I can walk. After surgery, I have to manage a spica cast for six to eight weeks that basically goes from my ribs down.
One of the most terrible feelings I have ever felt, is the feeling of walking into an operating room, knowing that it will be months before I will walk again. I remember waking up in recovery rooms groggy, sad, and alone. I would feel more defeated by the fact that I was lying in a cast in a hospital bed then pain from the surgery itself. The pain of a femur fracture is something indescribable. It is one of those things that you have to experience to fully understand. I never once questioned my faith, because through those hard times, it was all that I had.
My "true life story" is about conquering OI. So many people take walking for granted, but for me, it was a goal and a dream. I used to walk when I was young, but a vicious cycle of fractures made it hard to do as I got older. I used to use a wheelchair and a walker, but now I have accomplished my dream of walking independently. I have always believed in overcoming every obstacle. When I decided that I was going to walk on
graduation to get my high school diploma, I put my words into actions.
I began doing physical therapy at home twice a day EVERY day. I think I might have driven my Mother crazy with my loud music and daily exercise routine, but she knew that I wasn't going to let this dream go. She and I were both nervous about me getting off of the walker and onto a cane full time, but It was a risk I had to take. I would literally be in tears working the muscles that had grown so weak from atrophy due to surgeries, but I would push through it. I knew that if God wanted me to walk, he would somehow help me through it. There were times when I didn't know if I was going to be able to do it. I was just being hopeful and I had this overwhelming desire to walk to get my diploma. When I had my surgery back in ninth grade, I didn't think I'd be able to pull it off. Even after breaking my Fibula in a library in May of 2005 I didn't think I'd be able to do it. By the end of the day I always felt very fatigued, but it was the best feeling of exhaustion ever. Every night after I finished exercising I would thank God that he kept me safe. I knew that I wasn't alone. I knew that God would help me. I'm not sure if it was the exercise or the prayer that let me walk.
On graduation day, I was more excited to walk to get my diploma then to actually get my diploma itself. Oddly enough, I was in the shower when it really hit me, I was going to accomplish my dream of walking on graduation day! I exceeded my own expectations for myself, because not only did I walk on graduation, I kept up with my classmates at graduation practice. I don't know how many times I had to march down that football field, but I did it. It was hard to keep up because one stride of the people in front of me was probably three of my tiny strides, but I actually did it.
Not only did I walk on graduation, I graduated Summa Cum Laude. I've often had to miss school for long periods of time due to fractures but I still managed to keep my grades high. I ranked in the top 5% of my class.
"Mind is everything: muscle-pieces of rubber. All that I am, I am because of my mind." (Paavo Nurmi)
I find this quote very true and inspiring. I am who I am today because of how I think and work.
I feel like I beat OI, that walk was my victory walk. You have to understand that it has taken me so long, and it's taken so much hard work to be able to do something that everyone else usually takes for granted. The hardest step was getting off of my walker for good. It was one of the most frightening steps I had to take because it is extremely risky. All it would take was one wrong step or a tiny mistake and I would have to start all over again. I have broken many bones and endured a lot of pain. I am so
fortunate, how can I ever thank God enough? I don't think I can. I don't think I would have even tried to get this far if I didn't have God in my life. I think I'm starting to understand the "whys" and "hows" I've asked him all my life. I know this may sound hard to understand, but I feel blessed that I have OI. I've learned more about life from what I've had to go through then I ever thought I would. I would never change my past. I may have brittle bones, but I have one tough soul. And as I write this, I am sitting here in my college dorm praying that God will continue to teach me about life, lead me to an amazing future, keep me safe, and do the same for you.
I am a very strong person although my bones are weak. Nothing can stop me from doing the things I love to do!
Thank you for sharing your story Kristal.
Posted on September 30, 2006 at 09:44 AM
This week I sent out an email to a lot of the people whose blogs I read asking if they help spread the word about the blogathon. Quite a few of them responded and posted about this event, so thanks to all of you.
I've updated my left sidebar with links to their sites. They're all great sites, check them out when you get a chance.
If you would like your link added, all you have to do is "spread the word" by blogging about the blogathon on your site. Send me an email at firstname.lastname@example.org if you need more information.
Ed. note: If you don't see the changes, refresh your page.
Posted on September 30, 2006 at 09:03 AM
I've already got a few emails from people asking how they can leave a comment on this blog. I realize that there may be some of you who are new to blogs, so if you aren't sure on how to leave a comment, here is a simple guide.
At the bottom of every article I post, you will see a sent of links. To leave a comment, click on the link entitled "comments"
This will take you to the comment form.
Enter your name - Your real name or an alias is fine.
Enter your email address - This is required but know that your address will be safe and not displayed on the site.
URL - if you have a website, enter it here. When you comment is published, your name will be linked to the website your provide. If you don't have a website then you can skip this step.
Anti-Spam measure: please type in the blank whatever the text tells you to type. I do this because if verifies that you are a human and not some computer spam bot trying to leave comments on this site that link to inappropriate things. Before I implemented that feature I would get almost 100 comment spam entries a day.
Leave a comment - Type anything you wish, but remember I have the final say on what stays and what goes.
Click Post - And your comment should appear immediately
Posted on September 30, 2006 at 08:32 AM
If you are new to OI and want a better understanding of the disease here is a simple description:
Osteogenesis Imperfecta literally means "bone that is imperfectly made from the beginning of life." OI is a genetic disorder of type 1 collagen-- the protein "scaffolding" of bone and other connective tissues. People with OI have a faulty gene that instructs their bodies to make either too little type 1 collagen or a poor quality type 1 collagen. The result is that bones break easily.
Until the birth of my cousin's son two year I had never heard of OI. Up until that point in time, if you had said Osteogenesis Imperfecta to my response would have most likely been "Gesundheit!" or "come again?" But education is the key to understanding. I'd like to think that 2.5 years later I am better educated about the disease and have a better idea of what it means, how it affects people, and what can be done to help those who have it.
To a first timer, Osteogenesis Imperfecta is an imposing sound term, but to deal with the OI Foundation has provided some great resources:
Fast Facts - Basic info about the disorder.
The OI Glossary - terms and phrases related to OI.
a Guide to Understanding Bone Structure - A look at how the disorder affects the bones.
Introduction to OI - a guide to OI for Medical Professionals, individuals and families.
Also, the Wikipedia entry for OI has some good info as well.
If you have any on-line resources you would like to share, leave them in the comments below.
Posted on September 30, 2006 at 07:59 AM
Hi, I'm Joe, and I will be your host for the next 24 hours
As you may or may not know, I am hosting a blogathon for the Osteogenesis Imperfecta Foundation. All money raised will go to the Foundation in support of their efforts. For those not familiar with how a blogathon works, it basically means that I will be chained to my laptop for the next 24 hours and will be posting stories, articles, and-the-like every half hour until 8am tomorrow (Oct 1st) morning.
How can you help?
Submit your stories about OI - I want to hear from you. If you or someone you know has OI and would like to tell others about your/their life, please send it to me. You can reach me at email@example.com
Donate - Click here to go to the OI Foundation page about my blogathon and click on the link next to the thermometer or click here to go directly to the donation web site. Donations of all sizes are welcome. Plus, for every $5 you donate you will be entered into the drawing for the iPod Nano. As of this writing we already have $35 in the coffers, thank you to those who donated.
Advice - Send me your methods on how to stay awake for 24 hours straight. (Though I've got enough soda here to kill a water buffalo, so I should be good)
So what can you expect to see today?
I've asked those in the OI community to send me their stories about their lives and how OI has affected them. Many people have responded and I will post their stories periodically throughout the day.
I will be giving away two copies of the book What Life Is Like Living With OI which are signed by the Author Patricia Minor. To be eligible to win a copy, all you have to do is leave a comment sometime today or submit your story about OI. Email the story to firstname.lastname@example.org
The drawing for the iPod Nano will take place Monday Night (Oct. 2nd). To be eligible, all you have to do is submit your donation sometime before the end of business on Monday. I will announce the winner here on my site.
The layout of my home page will change dramatically throughout the day as I post more info and provide links web sites who have helped spread the word about this event. If something seems broken or out-of-wack, hit the refresh button, as I am probably working on the layout.
One post down. Only 24 more hours to go.