Walter's Story

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Walter

Guelph-Wellington Ambassador (2018-2019)

 

Early intervention plays an important role in helping children to reach goals important to them. In Walter’s case, early intervention may have helped to save his life.


Walter had struggled with gaining weight as a baby and at 10 
months of age, he wasn’t sitting up on his own and had yet to say his first words. Although his parents, Erin and AJ, knew something wasn’t quite right they never suspected that it was anything serious until the pediatrician took

one look at Walter and immediately referred him to KidsAbility. It was the first time that someone hadn’t said “don’t worry, he’ll catch up.”

When Erin brought Walter to KidsAbility, she was nervous and worried that she would only hear the words “can’t” and “won’t.” Instead, the team was quick to point out the amazing things that Walter could already do and the ways in which they could help him overcome some of his challenges.

 

“Walter has gained so many skills directly from his therapies at KidsAbility. We weren't sure he'd ever be able to walk unassisted, but he learned right around his third birthday with the endless help from his physiotherapist. He couldn't even make letter sounds at over a year old, but now speaks in full sentences with the help of his speech therapists,” says Erin.

The most significant thing Walter received along the way at KidsAbility was his diagnosis. As with many children at KidsAbility, often a diagnosis doesn’t come until long after therapy begins or even at all. However, it was the referral to a developmental pediatrician at KidsAbility that identified the cause of his challenges: Leigh Syndrome.

Leigh Syndrome—a rare and progressive Mitochondrial disease—causes muscles to be weak and sore and cells are unable to produce enough energy to run a body. Essentially, it would be like trying to run an entire household on a single battery. For Walter, it also has had an impact on his speech.

Children with Leigh Syndrome can experience major regressions when they are 3-5 years old—often when the disease is first diagnosed. However, thanks to early intervention, the treatment Walter benefited from early on helped to avoid further damage to his system.

“If the developmental pediatrician hadn’t recognized the abnormalities for what they were, Walter wouldn't be who he is today. He may not even be alive today,” says Erin. “Walter has had the chance to grow and develop, become who he is, and continue to learn and thrive every day. Without that referral early on, we'd be living very different lives.”

KidsAbility’s team has embraced the entire family as they worked together to help Walter achieve so many firsts important to him. As well, social workers have been there to provide support and guidance connecting Erin and AJ to resources and funding for Walter’s ankle-foot orthotics and
assistive devices that help with communication.

Even at five years old, Walter is well aware of his limitations and takes regular breaks to give his body a chance to recharge. He may not be able to jump or run, but Walter participates in a way that makes sense to him and doesn’t shy away from sports or swimming as he lives life to its fullest!

 

 

 

 

AMBASSADOR PHOTO COURTESY OF: lindsaycoulterphoto.com