Many lives around the world are affected on a daily basis by Down syndrome, a chromosomal condition that affects 1 in every 691 babies born. There are over 400,000 people living with the condition in the United States today. The most common type of Down syndrome is caused by an error in cell division prior to or at conception. This is called Trisomy 21, because three copies, instead of two copies, of chromosome 21 are created. Down syndrome affects one’s intellectual ability and can cause a higher incidence of certain conditions like heart disease, Alzheimer’s Disease and Leukemia. Due to improving technologies, those affected by Down syndrome are living longer than ever today, with 80% reaching at least age 60.
At ModernMom, we understand the importance of improving the lives of those living with this intellectual disability. So in honor of Down Syndrome Awareness Month, we chatted with actor and National Down Syndrome Society Goodwill Ambassador Chris Burke – the first American actor with Down syndrome to have a regular role on a television show (he played Corky Thatcher on ABC’s “Life Goes On”).
Chris talked to us about his work with NDSS and the National Buddy Walk Program. Buddy Walks are family events held all over the United States to raise awareness and celebrate the achievements and abilities of people with Down syndrome. Read on to discover how you can get involved to continue improving the lives of those affected.
ModernMom: I love your comment about it’s not about our ‘disabilities but our abilities that count’ – what is your advice to parents of children with Down syndrome?
Chris Burke: Love, support and encouragement of their children. Don’t look at the child’s disability, but look at the child’s ability so that he or she can accomplish everything.
MM: Please tell us more about your involvement with NDSS and Buddy Walks.
CB: I am the NDSS Goodwill Ambassador and I do office work. I enter data on the computer, I do UPS shipments and mailings, I take care of answering the door and greeting people who visit the office. I work with each of the departments and help out where I’m needed. Every year I attend several Buddy Walks® and perform with Joe and John DeMasi at various Buddy Walks. I sing with the band- the name of our group is Chris Burke with Joe and John DeMasi. Our songs are about family, inclusion and disability awareness. Buddy Walks are very important to me and to NDSS- we promote the awareness of children and people of all ages with Down syndrome, and everyone walks with families and friends. We’re promoting independence, doing things on our own, making sure that we are included in the community. October is Down Syndrome Awareness Month, which helps to promote awareness of people with Down syndrome within the community. This gives us to chance to be with other people and to go to school and get our education, which is very important to us. It puts us on the right direction towards independence.
MM: What is one of your favorite inspirational stories written by someone with Down syndrome?
CB: Carson’s story in the My Great Story collection is my favorite. She wrote from the heart and her mom Betsy is our founder of NDSS. Carson has a lot of spunk and I like working with her very much. I have a lot of admiration for her. She’s my best buddy.
MM: What lead you to become an actor on “Life Goes On”?
CB: I grew up watching other TV shows like Little House on the Prairie and Highway to Heaven and I knew I wanted to be an actor. I’m so glad that I had a chance to do a TV show about a family that has a son and sibling with Down syndrome. Corky is determined to never give up on himself and to learn just like anybody else. It taught our viewers that people with Down syndrome are capable of so much.
MM: What do you think is the best way for parents to teach their children acceptance and inclusion of children with Down syndrome and other disabilities?
CB: Everyone should be taught to believe in yourself, work hard and to never give up. Children should be given the chance to learn a lot from people with Down syndrome who are different than they are. The focus should be on their abilities, not their disabilities.