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Hello everyone, my name is Matt Hubert and I am trying to raise funds to purchase a Handicapped accessible vehicle for our son Ethan. Currently he is 13 years old he suffers from a rare condition called Arthrogryposis. Ethan’s condition is actually called Neurologic Arthrogryposis and sadly most kiddos that have this form of AMC don’t see they’re 3rd birthday. But Ethan now 13 years old is healthy and doing well! ( to learn more about AMC check out www.amcsupport.org ) In laymen’s terms it means multiple joint contractures. Basically where you and I have muscle and tendons, he has fibrous tissue connecting to his bones. He was born with this diagnosis and unfortunately he will require many surgeries throughout his life. He has already had several and our day to day routine is approximately 16 hours of skilled pediatric nursing. The nurses take him to a disabilities school and then stay overnight, because he requires constant observation. He also has a tracheotomy to breathe and a feeding tube for nutrition. He has also been diagnosed with with something called “Polymicrogyria” which means his brain did not form correctly at birth, and he also suffers from Cortical Visual Impairment or CVI and has seizure disorder as well… All these problems Ethan has sounds horrific. But if you ever met him, I guarantee that he would put a smile on your face and he would melt your heart… He has a thing for cute nurses. He’s made quite a few girlfriends at AI DuPont for Children… Anyway I’m a dad 43 years old and Ethan is just getting too big for being transferred from his wheelchair to a car seat… I don’t know what else to say other than if you can help in anyway way “prayers highly appreciated as well” we would gladly appreciate it…
Thank you and God Bless you…
Thank you and God Bless you…