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OI CHILD

Adam's OI Story

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OI Children are like snowflakes-----no two are just alike.

My name is Ronit Sanders and my 15 year old OI son is Adam Sanders. We live in Volcano, Hawaii on the Big Island of Hawaii near the Volcanoes National Park. Yes, we live on an active volcano and no, we aren't crazy. We have lived here in Hawaii for close to 6 years.
I'm a senior citizen (pretending to be a 40 year old mom) and a widow but I still work teaching remedial reading with the VISTA AmeriCorp program.
Adam has Type III moderately severe OI and was diagnosed in utero when his mom was 6 months pregnant by observable long bone fractures and shortened limbs. He was diagnosed lethal Type II and his parents were encouraged to leave him in the hospital and give his care to the State because he didn't have long to live. He was born by Caesarean section with multiple fractures.
We lived in New Jersey when we met Adam at 10 months old, brought him home with us when he was 13 months old formally adopted Adam when he had just turned two. Adam presented as a severe Type III and was immobilized in a Children's Special Hospital for disabled children and in a short term foster home where he lived when we met him. The immobilization left him so weak that he wasn't able to even lift his own head and he fractured consistantly from routine care. His head was outsized for his body and misshapen from laying on his back. His prognosis was very poor.
I am such a strong advocate for PT (physical therapy) for our OI children because as a severe Type III Adam wasn't expected to accomplish anything. We got him into water therapy and land PT and daily (very gentle) exercises at home right away. He was called the "miracle kid" at his hospital based PT because he passed all his PT goals before the new ones could even be typed up. This all took considerable time and lots of excercise and determination  ...nothing is to hard that gives our kids back a life. His first fracture with us was a trauma based femur fracture....an avoidable accident in which our big dog stepped on his leg but he had stopped fracturing from little or no trauma.
As he got more active he had multiple femur fractures all located in his "shephards crook" at the top of the femurs so he both femurs were rodded at 2 years old by Dr. Leon Root at HSS in New York City. He had been in a "tilted"
prone stander since he was 18 months old and walked independantly by the time he was just over 3 years old (which was sure never in anybodys plan for him). His 2 re-roddings because of growth and femoral bowing caused the most trouble for the next few years but he didn't have a regular fracture from the time he was rodded at 2 until he was 6 years old. Strong muscles protect weak bones.
Adam is a very short statured Type III at 40 inches and 55 lbs. and on Pamidronate since he was 10 years old which was too late to stop the progressively deforming part of his OI so Adam has multiple deformities which don't slow him down one bit. He had a full spinal fusion for his 85% kyphoscoliosis at 11 years old and many roddings in his femurs. He now walks mostly with forearm crutches (never has been able to stand a slow walker....he always wanted to run and learned to fly on his crutches....giving everyone around him heart attacks.) He has DI (dentiogenesis imperfecta) and the maxilla undergrowth typical of many Type III's.
Adam was featured in several pictures in the Growing Up With OI handbooks for parents and children. Most pictures are with his animals. He had a miniature horse in Texas and showed her in horse shows both in special wheelchair classes and in regular competition (on the ground with him leading) as well as riding and showing a Tennessee Walker on lead, he's ridden his donkey in the Hawaii mountains and now has 3 dogs and tropical fish.
Adam paddled his kayack on safe rivers in Texas and paddles in an outrigger canoe on a team here in Hawaii. He paddled last year in the Outrigger Canoe World Sprints in the very first ever Challenger Race for people with disabilities and his Team Hawaii won!! He's played "special" wheelchair basketball, played baseball on a Challenger team, gone to Extreme Sports Camp in Texas and in all had a pretty active (tho' protected) athletic life.
Adam's been in several plays (he was Tiny Tim in the Christmas Carol for a few years and other small parts) and his hobbies are acting, photography and cinemetography...he went to a "Kids College" in California this summer studying
computer photo as well as shooting and editing film.
Adam is in 9th grade in a small Charter School in Hilo, Hawaii. He's mainstreamed and uses a wheelchair in school as well as always taking his
crutches everywhere in case it's safe to move around. He uses his wheelchair at school for safety because the other kids are HUGE and because of his back deformities he puts full weight on his crutches and can easily be knocked over and he refuses to use the much safer walker. He can walk even without his crutches but only for short distances at home. He walks everywhere on his crutches when he's not in school....a lot of "towning" with his friends now that he's a teen. He has two male PA's (who keep me sane with a teenage son) that see that he gets out and about in our community.
 
 I want you to know that there IS a good life with OI for our kids.

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