Carson's Story

Images Captured by Cormack Photography

That big beautiful smile hides a mischievous side of Tiny Light Carson.  Turns out this 6 year old is a thrill seeker who likes sledding and rides that spin.  And for his parents Ronan and Shyla, Carson’s journey has been a whirlwind too.

Three weeks before his due date, an ultrasound showed enlarged ventricles in Carson’s brain.  Shyla says, “The hardest time of our lives so far was when we were forced to contemplate what life would be like without our precious child while he fought to survive several life-threatening seizures and respiratory infections.”

It took four years and many genetic tests before doctors were able to diagnose his extremely rare condition.  Carson has 1q 44 terminal deletion, which means he is missing genetic material at the end of his 1st chromosome.  He lives with a global developmental delay, a seizure disorder and a swallowing dysfunction that requires him to be fed through a tube.  

The family has not just survived, they have thrived.  Carson is loved by everyone who meets him and he serves as inspiration for the entire community.  This Tiny Light is making big strides – he just learned to walk in August.  His parents have big hopes for their affectionate son.  He now goes to school with his big brother…maybe they’ll graduate high school together down the road.  “We spent the first few years not daring to dream, but now we are strong and so is our vision for Carson’s future.”

Written by Elaine Yong