Phelan-McDermid Syndrome
Darus
Darus’s parents first grew concerned when their son reached the age of two. Insurance denied the request for an exome sequencing test three times. Eventually, the state covered the costs, and the test discovered a genetic mutation known as Phelan-McDermid syndrome. Darus is not able to feed himself, dress himself, use the bathroom himself, or verbally express the way he feels. He is in near-constant motion and has little to no sense of fear or danger. Darus loves playing at the beach and watching garbage trucks.
There have been some letdowns. I also think some people just don’t know what to do, or how to help. Sometimes we just have to be direct and let them know. But Darus has given us a lot of gifts: compassion, empathy, and understanding, to name a few.
– Abby, Darus’s mother