Deacon’s Story: ‘Always Moving, Always Going Somewhere’

Deacon’s Story: ‘Always Moving, Always Going Somewhere’

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Deacon pictured using walker with row of sunflowers behind himDeacon is four years old, with a larger-than-life personality and is always looking to make new friends.

He has a cautious nature, but once he has warmed up to you, he’s really loving and just wants to have fun and let you know what’s on his mind. He loves excavators, backhoes, and any kind of heavy machinery. He’s also very active and competitive and loves all kinds of sports; soccer, sledge hockey, fishing, golf, and is currently playing tee-ball. But Deacon’s parents, Alana and Curtis, didn’t always know that he would be able to be so active.

Deacon was born with spina bifida, caused by a malformation of two vertebrae. Doctors told his mom and dad that he may never be able to walk or talk, would have very low quality of life, and originally suggested terminating the pregnancy. This left them feeling scared, alone and thrust into a whole new world that they knew nothing about. Curtis was familiar with someone who has spina bifida and knew she lives a happy and fulfilling life. So after discussing with additional specialists, they made the decision to move forward with the pregnancy.

Deacon underwent extensive surgery when he was a baby and has been connected to Five Counties since leaving the neonatal intensive care unit in his first weeks. Since his first appointment Deacon has been attending Five Counties regularly for multiple services such as physiotherapy, occupational therapy, and speech therapy. Once he starts school, he will also receive services that aid in his academic success.

Deacon shown wearing boxing gloves with a caption 'Little Fighter'“He’s always moving, always going somewhere, and we credit a lot of that mobility to Five Counties and all the work they have done with him. Even through the pandemic, we were going through some stages of critical development, and we always received really amazing care.”

The biggest challenge Deacon and his family have faced is perception. “We are trying to prepare him for the questions we know he will get”. Deacon and his family often find people judging him and his abilities and put limitations on him when he is a very capable and hard-working kid. Alana says to “never put any limitations on anybody. Go with the flow and if you have a positive outlook, that makes all the difference. Deacon could say something is too hard but instead he looks at things positively and tries everything. Deacon doesn’t know he’s any different. He knows he wears braces, but he just thinks they make him go faster, they are his rocket ships”.

Alana and Curtis especially appreciate the amount of support and flexibility Five Counties has been able to provide and the Centre’s approach to family health and well being. They credit many of the positive differences they have noticed in Deacon to Five Counties’ services, specifically his physical abilities.

Inspired by their son, and motivated by their own experiences, Deacon’s parents have joined together with a group of other parents to found Spina Bifida Families of Canada, an organization that helps educate medical professionals, raise awareness in the community, and support families with the added expenses that come with having a child with spina bifida. “My favorite part is connecting with people and letting them know they have a community behind them.” says Alana.

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Category: General News,Testimonials