November 2021 AMCer

Micah was diagnosed with Arthrogryposis Multiplex Congenita (AMC) at birth. His differences were detected in an ultrasound at 21 weeks gestation; however, they were unable to determine the level of affectedness in utero and did not give an official diagnosis until he was born. Micah was premature at just 3 lbs 15 oz and affected in all four limbs, only able to move his head. In the NICU for a few weeks after he was born, Micah saw an orthopedic doctor and a geneticist but did not see his first specialist until the family went to Shriners Houston where he had a clubfoot surgery when he was 8 months old.

Those first few years, work was also done on Micah’s hands and he had a few more operations but around 3 years old his parents were told he would never be able to walk and would be in a wheelchair for the rest of his life. Thankfully, they refused to believe this and sought another opinion. Micah’s mother contacted Shriners in Philadelphia and they waited 2 years on the waitlist before finally seeing a specialist there in December of 2015.

Micah had major surgery on his hips at Shriners Philly in 2016 and while there they met another AMC family who told them about Dr. Feldman at The Paley Institute in Florida. Dr. Feldman was recommended to treat the webbing behind Micah’s knees. Micah started seeing Dr Feldman in July 2019 and had his first surgery with Dr. Feldman in October of 2019. Since then Micah has been able to stand up and walk a few steps with assistance. Micah is now going to The Paley Institute for all his orthopedic and PT needs. He is currently 13 years old and in the 6th grade.

He and his family are in Florida and Micah is undergoing intense therapy to help him manage the day-to-day tasks necessary to become even more independent in his adolescent years. Despite his struggle for independence and mobility, Micah remains a happy and caring individual.

Helping AMC Families is thrilled, through the support of our amazing donors, to be able to assist Micah and his family with their lodging expenses while they stay in Florida for treatment. Helping AMC Families works directly with lodging providers to pay off balances due for the trips away from home frequently required for AMC families, who must travel long distances to obtain the best medical care for their children.