Do You Have a Great Story?

Next month is Down Syndrome Awareness Month, and to help celebrate, the National Down Syndrome Society (NDSS) will hold Buddy Walks in more than 250 communities around the country. The goals of the Buddy Walks are to promote acceptance and inclusion for people with Down syndrome and to raise funds for local programs. This Saturday, September 24, my uncle, Chris Burke, will attend New York City’s Buddy Walk in Central Park.

Chris is best known for playing Corky on the TV show “Life Goes On” from 1989-1993. Since then, he’s made lots of TV appearances, traveled around the world speaking to families, and since 1994 he’s served as NDSS’ Goodwill Ambassador. (Chris is a big part of why I feel so strongly about people misusing the word “retarded.”) That’s us in the picture, with his mom and my grandmother, taken during one of our many vacations together. This one was in Key West when I was about 6 and Chris was probably 13.

NDSS has a cool program called My Great Story, which honors those who have Down syndrome by sharing stories that highlight their achievements. I was touched that Chris chose to write about his dad (my grandfather); I also love the story NDSS founder Betsy Goodwin wrote about her daughter, Carson, otherwise known as “The Mayor of Main Street.” Carson works as a greeter at Sephora and sometimes Betsy will park outside the store to watch the reactions of the customers as they come and go. She loves to see how many of them leave smiling: “If I had been told 30 years ago that my new baby would spread so much good will, it would have made those difficult first months a little easier,” she writes. “But then, of course, one never knows what each baby’s particular gifts will be. We only know that each will have some.”

To participate in a Buddy Walk near you—and by the way, you don’t need to know someone with Down syndrome to walk—click here. Take a few minutes to be inspired by the loving entries in My Great Story. And if you do have a loved one with Down syndrome, share a story of your own.

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  1. by Kathleen Haikes

    On September 20, 2011 at 5:32 pm

    I have a really great story! My story is about my brother Matthew James Newell~ actually it is his story. Matthew was born on Nov. 15, 1985 with Down Syndrome to my parents, Harold and Judy Newell. He truly was a gift to our family. He could tell you the scores to the Philidelphia Phillies and Notre Dame games like no other! He loved to play pool and yes he usually won! He worked at our family business where he was know to many as “The Boss”. Family was everything to my beautiful brother. In August of 2010 Matthew wanted to go on a family vacation to Avalon, NJ. While there we enjoyed beautiful days on the beach, flying kites with his nieces and nephews, wathcing the Phillies and enjoying our time together. It was on Wednesday, August 18th that Mattew looked tired. So my father told him to sleep in the king size bed in the master suite with Mom. Something he never did~ not even as a baby. On Thursday, August 19, 2010 my Mom woke up and Matthew said “Good Morning Mom, I slept wonderful!” My Mom said for him to stay there since it was only 7:10am. We were going to the Cape May zoo later that morning. My Mom told him she would be back in about an hour with his medicine. Matthew was diagnosed with gran maul seizures about a month before~ nothing that seemed life threatening. We were told it was very treatable with medication. When my Mom went up around 8:15am she found my brother Matthew unresponsive. It was on August 19, 2010 our lives changed forever- our beautiful blonde, blue eyed brother had died of a seizure in his sleep.

    Two weeks prior to the day Matthew was burried be had the pleasure to meet President Clinton at our local diner. He was a favorite of Matthew’s. When I asked that day if he was happy he said the happiest day of his life. My brother Matthew lived a beautiful inspiring life! When 1500 people stood in the pouring rain here in Scranton, PA, you know he was special! We for one were the special ones for having him in our life!

    I feel the need to share Matthew’s love to others so my family and I have started Matthew’s Mission- a non profit group that gives back to those with special needs. Every year I said I was going to do our local buddy walk and never did so last year I got a team together of hundreds who walked in memory of Matthew. We then donated the proceeds from our t-shirts to our local Buddy Walk.

    At Christmas time we had a breakfast with Santa and had to close reservations with 500 people! That day another 100 people showed up in support! Everything Matthew’s Mission does has by brother Matthew in mind. We have recieved numerous donations from the Philadelphia Phillies, who actually called to express their sorrow when Matthew died. With proceeds from the breakfast six children with special needs recieved Christmas gifts in memory of Matthew.

    When it was Easter time – I wondered what to do~ an Easter EGGstravaganza came to mind. We filled over 11,000 eggs with candy and toys. We had food, prizes, crafts and more. To my surprise over 2000 people showed up. Such an amazing thing to see! All there to share in Matthew’s memory!

    The most important thing to my brother Matthew was living life to the fullest with family. I have found that in the past year we can help our community see life in the eyes of Matthew. We are sharing the love he shared with us. His name was perfect~ Matthew- Gift of God!

    He truly showed me what life was all about~ not a moment goes by I don’t think of him!

    Sincerely,

    Kathleen R. Haikes

  2. by Kara Corridan

    On September 26, 2011 at 11:44 am

    Kathleen,
    Thank you so much for sharing Matthew’s story. He sounds like he was an incredible person and I can only imagine how much your family misses him. I’ll check out Matthew’s Mission. Thanks again for writing and I wish you the best.

  3. by tworzenie stron łódź

    On November 14, 2011 at 8:40 pm

    Brilliant!