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


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.


Find this story helpful? Share it with someone you care about.


Related to Down Syndrome

My Twin Brother Has Down Syndrome, This Is What I Want Moms of Babies With Down Syndrome to Know

  I myself have not experienced having children, or have had to hear a Down syndrome diagnosis first-hand. However, I hope the perspective I share as a twin to someone with Down syndrome can help mothers who are still wrapping their heads around their baby’s recent diagnosis. Especially for mothers who already have other children, [...]

5 Things Parents Who Receive a Prenatal Down Syndrome Diagnosis Should Know

I’ve spent a lot of time thinking about what I needed to hear after we received our prenatal diagnosis. I didn’t know anyone who had a child with Down syndrome at the time, so I had no one who actually knew what I was going through to speak encouragement into my life. My friends and [...]
Boy with Down syndrome speaking into microphone, four teenagers stand behind him, there is a table with trophies

This Is What Community Inclusion Looks Like for My Son With Down Syndrome

My 14-year-old son, Elijah, has Down syndrome, but it does not define him. He has a unique perspective on life and I learn from him every day. He is the most caring and emotionally intuitive person I know, and his intelligence in these areas far exceeds my own. He is full of humor with a [...]

16 Lessons I've Learned From My 16-Year-Old Daughter With Down Syndrome

Until 2002, I had no idea what was Down syndrome was and how it impact my life. It seems just like yesterday when I was 38 years old and pregnant. I was considered high-risk, which landed me at the geneticist office of Research Medical Center in Kansas City. I had to undergo a prenatal test to [...]