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How My Brother With Down Syndrome Inspired Me to Start a Non-Profit Organization

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As I prepared to attend the Canadian Down Syndrome Society (CDSS) 2018 annual conference on May 18-20th in Hamilton Ontario, I couldn’t help but reflect on how much I miss my brother, Ken.

I grew up alongside his brotherly love. I am so grateful to have had him in my life for as long as I did. The qualities of unconditional love, joy, laughter, heartfelt friendships and acceptance for everyone flowed out of him effortlessly. I couldn’t help but learn them since I was his little sister and I wanted to be just like him.

I often receive comments from people who don’t understand Down syndrome, thinking it must be an awful disease or something to be scared of, and that Ken must have been quite a burden for our family. Nothing could be further from the truth. He was an amazing fella to all who knew him and had the pleasure of meeting him.

Ken and sister Di hugging

Passing away at age 51 due to complications from Alzheimer’s, we were faced with numerous challenges. Most of which were related to the fact that so many people, organizations and health care workers, didn’t understand what adults with Down Syndrome looked like as they developed dementia. Admittedly, we as a family didn’t know either. Watching my brother go through the debilitating, heartbreaking challenges he faced and feeling utterly helpless to help him, is what prompted me to write his story: “Hello My Name is Ken.”

As a result of this story, and in the hopes that we can make a difference for others, we created an online non-profit to help build awareness and offer support for adults aging with Down syndrome. It’s a new chapter for us as a family and we learn something new every day about the connection between Down syndrome and Alzheimer’s disease. We hope to include as many resources as we can about Down syndrome and related dementia. Eventually offering training programs as well for family and healthcare workers who will someday be caring for an amazing person with Down syndrome who is faced with the challenges of this disease. A disease that could impact any one of us.

Learn more at Ken’s Place.

Originally published: May 2, 2018
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