This is Sawyer and he has the most amazing ability to make others smile and laugh.
Sawyer was diagnosed with Champ1 in 2017 when he was 5 years old.
Right from day one we began to face medical complexities including hypotonia and the inability to latch (including difficulties taking a bottle). Projectile vomiting and choking on formula was something we dealt with on a daily basis.
We suspected something was off but because Sawyer was my first born, we didn’t realize just how many milestones were being missed. Our Pediatrition at the time, was quick to dismiss any concerns we had. We even had to battle to get a referral to an eye specialist who would later correct his strabismus in both eyes via surgery.
When he was 4 we enrolled Sawyer for an early education program that had placements for community children that were integrated with children who had mild to severe delays and disabilities.
Several assessments were done. A month later we got a phone call from the school.
The program was no longer taking community children … however Sawyer had scored low on all the assessments and he qualified to come into the program with mild delays.
By the end of October once they had completed even more thorough assessments, they changed his coding to severe.
We learned that he had communication delays, fine and gross motor skill delays and speech delay. He also had sleep issues and because of the hypotonia and coordination struggles, he couldn’t feed or dress himself. He still had cycles of vomiting and often choked on food.
With a full team of physical, occupational and speech therapists and learning how to support our son, we started to see progress.
With the help from this team, we were referred to one of the best doctors in Alberta.
He took us in right away! He ordered a Chromosomal microarray within the first 15 minutes of meeting us.
December 27, 2017 the nurse called to tell us that the results had come back and that our son had something called Champ1.
Our doctor helped us access funding which helped us create an amazing home team of therapists for home support. We had an amazing OT who also became our home coordinator and she’d always find the perfect matches for Sawyer. We gained SLP, PT, and a psychologist along the way.
Sawyer’s infectious smile and bright blue eyes usually captivates anyone that spends a few minutes with him.
He’s one of the hardest working kiddos we know.
Today he’s in a mainstream grade 5 but works about two levels below – We’ve been fortunate to have the most fantastic EA work with him for most of his elementary years.
It’s hard to believe that only 5 years ago this beautiful boy couldn’t even jump or feed himself. He truly is a Champ1on.
When we begin to readjust our own dreams and visions for our children, I truly believe we begin to see not what they can’t do….. but what they can do.