A little boy’s community

Emerson photo C18 conference 2014

“I have ants in my pants in my brain!”

This is Evan’s* very astute description about why he can’t sit still and focus in class. He is super-duper cute and turns eight years old this month.

Many organizations have helped him and his mother, Madison*, identify and navigate numerous developmental issues over the last eight years. You see, he was born with a chromosome deficiency called 18q-. Of course they didn’t know it at the time of his birth.

At the age of one, Evan started wearing hearing aids and going to speech therapy at the Canadian Hearing Society. But his therapist realized that his hearing wasn’t his only developmental issue. From two to four years of age, Evan went through a multitude of assessments going from specialist to specialist in neurology, psychology, behavioural therapy and genetics.

This is when you understand the true meaning of resilience. Developmental issues can only be identified as they emerge. As each developmental milestone was missed, the issues Evan faced went from “a whisper to a scream,” according to Madison. But despite the obvious frustrations he faces daily, he has a shining personality and great sense of humour with a laugh that starts in his belly and brings smiles to everyone around him.

When Evan was diagnosed with 18q- at the age of four, it explained his speech and language delay, why he is hard of hearing, his autism, his fine and gross motor coordination issues, and his sensory processing issues. Fortunately he doesn’t have any of the medical issues, such as heart and kidney problems, that other children have because of a chromosome 18 abnormality.

But what did this mean for Evan’s future? What could Madison expect in developmental achievements year over year, and how would she be able to support his needs?

The answers to these questions lay in their involvement in the communities of Holland Bloorview and the Chromosome 18 Registry and Research Society. I say communities because these two organizations provide an incredible support system that is like a family to them.

When you’re faced with something as obscure as a rare genetic abnormality it’s not always clear where you can go for support or who can provide service, as the challenges and needs are so varied.

Holland Bloorview’s vision is to create a world of possibility for kids with disability – so this includes Evan. This is where he had his initial developmental assessment and many therapy classes. But what makes this an important community for Evan and Madison are the things that are not covered by government funding like the accessible playgrounds and gardens on their campus, the inspirational newsletter to parents, and swimming lessons.

The swimming lessons at Holland Bloorview serve as a type of physical therapy, without being actual therapy. The classes are integrated with ‘typical children’ which helps Evan feel like a typical child, and helps them understand children with special needs. Half of the instructors in this program are volunteers – the swimming program wouldn’t be possible without them.

The swimming program also provides an incredible support for parents. Consider that Madison is in hours of therapy sessions each week with Evan. Swim class is the only time that she can sit back and connect with other parents while observing Evan having fun in the pool. She has made many friends here who understand what she’s going through day to day; who are on a similar journey with their children.

I would like to thank the over 200 corporations and organizations, and countless volunteers that support Holland Bloorview. When you want to know the difference that your efforts make, think about the on-going impact you have on Evan’s life.

BMO Volunteers

BMO volunteers at Holland Bloorview

The other essential community that Madison and Evan depend on is the Chromosome 18 Registry and Research Society (The Registry)  located in San Antonio, Texas – the only organization in the world that specializes in helping children with the same disorder as Evan.

The Registry is dedicated to providing the latest in medical and scientific research on the syndromes of chromosome 18 with a goal to “making chromosome 18 conditions the first treatable chromosome abnormalities.” Despite its global reach, it really is a local community composed of the parents of individuals with a chromosome 18 abnormality.

Madison finds solace in knowing Evan is not alone. They attend the annual conference (hosted and organized by families) whenever possible and are in regular contact with over a dozen families across southwestern Ontario. Even though not one child has the exact same abnormalities, they can talk to different families about the one or two similar issues that they face. “We have the most accepting, non-judgemental comradery, where everyone cares for and accepts everyone’s kids,” she says.

This organization is supported by regional events across the US, including an annual golf tournament. There is one big difference with this tournament – many of the sponsors are the groups of friends and families of children with a chromosome 18 deficiency, not just corporate sponsors. In fact, a majority of the events are events organized by families: birthday donations, selling items such as baseball shirts, quilts, jewellery or nutcrackers, and fitness events. A truly community based support group with such extensive heart and reach.

Member driven fundraiser

Member driven fundraiser

We all have different reasons for giving, whether financially or through volunteering. We each do so for our own reasons, to act globally or build a community, or help an individual. Holland Bloorview and the Chromosome 18 Registry and Research Society are just two examples of organizations that rely heavily on charitable giving and volunteers; and the community they provide families is priceless.

*Names have been changed

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