When Chelsea reached out to me about family photos late last summer, I had no idea how much her little family would touch my heart.
When I first met her sweet two-year-old daughter, she reminded me a bit of my younger brother, Pat. It was in the way she held her hands. A bit of history here—Pat was diagnosed with Metachromatic Leukodystrophy when he was six (a genetic disease so rare that it still gets underlined in my text editor as a misspelling to this day). It’s often been mistaken for cerebral palsy by those who have met him.
I’ll tell you this—I’ve always been sensitive and protective about the way others approach Pat. From the time I was eight, I was keenly aware that my family was a bit different. I couldn’t ignore the stares in public, and I’ve always appreciated those who have dared to ask about Pat’s story.
So I’ll be honest. When I met Chelsea and her daughter, I was a bit nervous to ask about her muscles, about the way she held her hands. But I knew that I had always wanted to be asked, and so I asked her. CP was the answer.
Chelsea—thank you for sharing a little bit of your family story with me, and thank you for trusting me to document your family.