(VVNG.com)- Sebastian has the same basic desires as most 5-year-old boys, the problem is he has Osteogenesis Imperfecta or Brittle bones. Sebastian was born at 28 weeks gestation, 12 weeks earlier than the normal pregnancy. He was born a tiny 2 pounds and fought for his life.
According to his mother, he was diagnosed at only 2 weeks old when he had the first break, his left femur. The St. Mary’s doctor let her know that broken bones were not usual for even preemies so they believed he had brittle bones. This rare genetic disorder has caused young Sebastian to suffer from 30 broken bones, 9 surgeries, and rods in his bones. His condition also caused hearing, eye, and skin problems as well as scoliosis. The highest risk for Sebastian is not a broken bone, but respiratory complications due to his rib cage deformity (barrel chest) causing his lungs too small of a space to grow correctly.
Sebastian plays with his brothers and sisters and attends a regular kindergarten class that helps provide some normalcy in his life. At times this young child needs a walker or even a wheelchair to get around and other times he could just walk. He can write but since he has very fragile bones even that can cause small fractures causing pain. He wants to do the normal things kids his age do, but understands that can mean broken bones.
It is essential for Sebastian to go to the hospital every 4 months for medication that may help strengthen his bones a little bit. He does not like the needles, but he does know the medicine helps him. He is aware than his bones can break from a small fall, or even just a bump. His tiny body aches and warm baths and medicine are utilized to take the edge off of his daily pain.
His Physicians recommend a spa for therapy so he can exercise, strengthen muscles and possibly walk more often like his friends. The warm water will also assist in reducing his chronic bone pains. Sebastian’s family has some extra expenses due to his condition and can not afford this spa at this time. If anyone would like to help them raise funds for it, they can donate to his gofundme account here: https://www.gofundme.com/g7qnpw
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