Josiah was born with one of the few genetic forms of Arthrogryposis (also known as Escobar Syndrome) as was his older sister Mckenah. The odds of having more than one child with Escobar Syndrome, is around 1 in 800,000. Because of the nature of the syndrome, he has had to have surgeries when he was a month old which includes; a tracheotomy and having a g-tube put in. He was born with a floppy airway which caused his heart rate to drop and his oxygen level to drop. Because he aspirated as well, he had to have surgery to insert a g-tube for feeding. He has been to Philadelphia on a more consistent basis than his sister. He has a body cast that he has to wear 3 months at a time to correct his scoliosis and to prohibit it from getting any worse. He will most likely have to stay in the body cast until he is age 5 at which time they will make the decision whether or not to do surgery on his spine which has many potential and harmful risks. He will have many more surgeries as time goes on, up to and beyond when he stops growing.
- What Makes Me Unique:
- Arthrogyposis (Escobar Syndrome)
- Contact Information: