December 2022 AMCer

Charlie is a spunky 10 year old with THE BEST dimples.  He has Arthrogryposis Multiplex Congenita (AMC), but he doesn’t let his AMC define him. He never lets it slow him down or get in the way of what he wants. 

It was his spunk that drew his mother into his adoption bio. Scott and Paula knew nothing about Arthrogryposis, but knew this charming little boy needed a family to love him and do everything they could to advocate for him and his needs. They jumped feet first into everything AMC. 

The O’Briens had already adopted twice (Cece from Kazakhstan and Adhu from India), so they were no strangers to the adoption process or parenting special needs kiddos. 

As soon as Charlie arrived in the U.S., they did all they could to get him the best care possible. He received weekly PT and OT, multiple rounds of serial casting on his feet, and lots of educational “catching up” while also learning how to be a kid. 

After two years, Scott and Paula knew there had to be more that could be done for Charlie. Local doctors told them he would have to walk on his knees or use a wheelchair for the rest of his life. They did not agree, so they sought out new opportunities for him. In December 2018 The O’Briens learned of AMC Princess Ana and the amazing surgery she had on her knees/legs to help her walk. It was an “AHA” moment for all 3 of them. 

Scott, Paula, and Charlie flew down to meet Dr Feldman at the Paley Institute in February of 2019. They knew right away he was Charlie’s best hope of walking someday. Charlie had the “Feldman special” surgery in May of 2019. They had hoped Charlie would be walking by the end of that year but, in true Charlie fashion, he blew everyone away and took his first independent steps in the middle of September 2019. Just four months after that major surgery and he hasn’t looked back since!

Charlie is now playing baseball with our local Miracle League, doing therapeutic horseback riding, and even riding his own adaptive tricycle. He takes every opportunity he can get to be a typical boy. 

2021 brought on multiple growth spurts for Charlie. While growth is good, in an AMCer it also brings regression. Charlie had regression of his left foot and more serial casting helped, but it wasn’t enough. That’s when Dr Feldman introduced the family to Dr Dobbs – the foot whisperer. 

The O’Briens are in West Palm Beach right now, staying over the holidays. Dr. Dobbs is correcting the rotation and tightness of Charlie’s left foot and Dr. Feldman will also be doing some work on Charlie’s left hand (his dominant hand) to hopefully give him more grip and dexterity. 

Scott and Paula will continue to do anything they can to give Charlie as much independence as possible. He’s currently on the wait list for a service dog that they hope will help him even further his independence goals next year. 

Helping AMC Families is assisting Charlie and his family with mileage, meals, and lodging expenses during their long stay in Florida over December 2022 and into January 2023.