When you hear statistics like “1 in 3,000” or “only 104,000 in the U.S.,” it’s hard to feel like others understand what you’re going through with a rare condition such as arthrogryposis. So, imagine how wonderful it must have felt for the nearly 130 people who gathered for the Arthrogryposis Mini Meet-Up recently held at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del.
A condition of the joints and muscles, arthrogryposis impairs children’s abilities to use their shoulders, wrists, fingers and lower extremities. There are many variations — some mild, some severe. There is no cure for arthrogryposis, but there are treatments that can help to maintain and maximize a child’s range of motion and function.
The goal of the Mini Meet-Up was to bring together kids and adults with arthrogryposis so they could share their stories, their experiences and their support with each other. And, perhaps most important, they were able to share ways they’ve learned to do things some may have never thought possible — activities like participating in sports, playing an instrument or even just dressing by themselves.
It truly was a wonderful event and such a pleasure to be in attendance, just to see the smiles on everyone’s faces and the joy of watching these amazing kids getting to meet grown-ups who are flourishing with arthrogryposis,