I hung out with the Persin family last week and one of the more energetic and chatty 3 1/2-year-olds I've met, Aleck Persin. Aleck was born with arthrogryposis, a condition caused by multiple joint contractures and characterized by muscular fibrosis and inhibited movement of the joints. He sometimes has trouble lifting his legs high enough to walk over things and is working on increasing the flexibility of his wrists and elbows, as well. It didn't stop him from reading every "The Pigeon" book he owns, including "The Pigeon Wants a Puppy" and "Don't Let the Pigeon Drive the Bus," playing catch and blowing bubbles, and talking a nice stroll around the block in their Logan Park neighborhood while I was there. He was really into my camera, too - probably because his mother is also a photographer.
Lynn Persin, Aleck's mother, started a blog in 2011, telling the story of the difficulties and joys of raising her son with her husband Craig. She also recently opened up about the baby girl she and Craig lost in 2010, an unexplained stillbirth after 8 1/2 months of what she described as an "unremarkable" pregnancy.
Aleck's condition is not progressive. Lynn wrote on her blog, "We’d love for him to be able to function in this world as an independent being, able to walk, dress, feed and take care of himself without the help of others or machines, but more importantly we want him to enjoy his life as any other boy or girl would and we hope that we can be the encouraging and supportive parents that we know he needs for a fulfilling and happy life."
You can read more about her experience and more about Aleck in Heidi Steven's story.