Sarah's Story

Images Captured by Melissa DePape Photography

www.melissadepape.com

The first few weeks of Sarah's life were spent in the hospital because she was unable to eat on her own.  A genetic test was done after she started missing milestones and an answer was found to the concerns her family was having.  Sarah was diagnosed with a rare chromosome deletion which has resulted in global delays and feeding obstacles.  Unfortunately, there are no other documented cases of the same deletion to date.

Since her diagnosis, her family has learned she also has a seizure disorder.  Sarah has started Anat Baniel Therapy, which has resulted in positive changes both physically and cognitively for her.  Through online groups, her mom has met other parents who have children with unique diagnoses, making the journey a little less lonely.

Now, at three years of age, Sarah can walk and works hard to keep up to her big sister Lily.  She is learning sign language and loves to attend preschool.  Sarah absolutely adores Lily, is extremely affectionate with her kitty and loves to dance.  Just like all other little girls, she manages to get herself into trouble - she can often be found climbing on everything. Sarah has recently found her independence; learning how to communicate her strong opinions however she can. 

Though it has been tough for Sarah's family to deal with an unknown future, this Tiny Light makes it all worthwhile. "As each month passes and we see her continue to grow and change, we are inspired by her smile and hard work. We will continue to work hard ourselves to supper her wherever her dreams take her."

written by Kristi Hall-Busque

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 1^st 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