I love giving hugs, playing pretend, my brother and being a helper. I also have Prader-Willi Syndrome. It's not easy having a rare genetic disorder, but I don't let it slow me down.
My first days
My first few days were pretty scary. I couldn't regulate my body temperature so I had to stay under a warmer. I couldn't take a bottle so doctors inserted a feeding tube to ensure I was eating enough. Due to low tone in utero, I struggled to open my hands and move my wrists. I became fast friends with a speech therapist and occupational therapist who helped show my parents how they could support my development. They worked very hard to help me learn how to eat and move.
first day of Kindergarten
Thanks to a team of caring therapists and doctors, a loving family and countless friends, I've achieved many milestones. I love going to school and playing with my friends on the playground. I still need extra help, but I'm getting stronger every day.
A "Normal" Kid
Prader-Willi Syndrome is something that I have, but it isn't who I am. In a lot of ways, I'm just a normal kid. It's definitely harder for me to be active, but I enjoy playing outside and gymnastics. This year I've been taking swim lessons and hope to play t-ball in the fall.