I'm part of another special needs mommy group that is more just mommies on the east side of Phoenix. For those of you who aren't familiar with Phoenix, it can take a couple of hours to drive from one side of the city to the other, so coordinating with families who live in your general area (even though that might still be 20-30 minutes away) is important. A few months ago, this group had a family outing at a local park and that's where I first met Derick.
Derick has a very rare condition called Cockayne Syndrome. Cockayne Syndrome (CS) is a rare genetic disorder characterized by poor growth, microcephaly, progeria (premature aging), sensitivity to sunlight, moderate to profound developmental and neurological delays, and a shortened lifespan. You can read more about it at this website. His family didn't get this diagnosis until Derick was 5. As you can imagine, up until then, it was a struggle with the doctors to figure out what was wrong. When Derick was 14 months old, they catagorized him as failure to thrive because of how small he was. Eventually, after a long journey, the neurologist told Derick's family it was Cockayne Syndrome, but that this was so rare, he didn't even know anything about it, so good luck. It's so rare that Derick is the only living child in Arizona diagnosed with this condition.
Derick's parents are pretty cool too. Like most parents, they loved talking about their children. They told us how they have an above ground pool that Derick likes to play in and do therapy in. But since he's so sensitive to temperatures, they've rigged it so that it's a balmy 88 degrees or warmer! Derick's dad seemed like he was really good at coming up with ways to accommodate Derick's needs so he could play outside and enjoy himself doing different things.
Derick's parents are also very active in the Cockayne Syndrome national parent group. Every year they travel across the country to attend their conference for a week with other families and children with Cockayne Syndrome. How cool is that?!
Derick attends school, but does have to stay inside a lot because of his sensitivity to UV. However, his family has a number of pieces of clothing that protect him so that he can be outside. Derick wears hearing aids and AFOs and can use a walker. He loves to play with his peers at school and his younger brother at home. He also enjoys visits from his PT (we are lucky enough that he shares Denise with us!), his OT and his speech therapist. He is very social and loves to be out and about to people watch and visit.
I can't wait to have another playdate/family outing with Derick. He is a really nice kid and is such a lover. His family is really blessed to have such a loving child.