Colson's Story

Images Captured by Absolute Photography

Meet Tiny Light Colson. He loves music, dancing, playing superheroes and making funny faces. Basically, he loves anything that gets him attention. His mom says there isn’t much this little real-life superhero doesn’t like. Colson has been thrown challenges since the day he was born but he doesn’t give up easily.

Colson came into the world weighing four pounds, and although he was tiny, he was in his mom’s hospital room the very next day. His parents and doctors took that as a good sign that he was ready to take on the world. At first, his parents found it scary to handle such a small baby, but before long, after some guidance from the nurses, they were on their way home. He was still very small but his parents were optimistic he’d catch up in growth and be like most other babies. However, despite their optimism, Colson didn’t catch up. At his next follow-up appointment, Colson’s mom knew something wasn’t right and asked for a referral to a pediatrician. Sure enough, the pediatrician felt the same and the testing began. Colson and his parents all got blood work done and 10 weeks later Colson was diagnosed with Russell-Silver syndrome.

Russell-Silver syndrome, or RSS, is a growth disorder characterized by slow growth before and after birth. Babies with this condition have a low birth weight and often fail to grow and gain weight at the expected rate. This condition is estimated to affect one in 75,000 – 100,000 people. Researching the disorder, his parents could find little to no information, but luckily they did find the Magic Foundation, which has been an incredible support system for them.

Despite the difficult challenges Colson has faced in his short life, he’s done remarkably well. He never needed a feeding tube and met most of his milestones by just a week or two. Colson has also started growth hormone therapy. His parents hope he can catch up on growth, not just in height but to strengthen his heart and organs and build some muscle because he’s still so petite. The title “Tiny Light” seems like it was made for Colson. His parents say, “The most amazing and wondrous thing about this journey is that even though he is missing a chromosome and some growth genes, he is perfect in his own tiny way.”

Written by Adrianna Tailleur