The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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Soaring with Sean
Soaring with Sean

Sean has been with us nearly four years, and this October marks our 5th Buddy Walk® in Philadelphia. Our first Buddy Walk, we were joined by a group of loving, caring family and friends, who embraced Sean from the start. We were 40 adults and children, who came from PA, NJ, CT, MA, WA and ID, just to support Team Sean. We raised about $1,500 as a team that year, and Sean was just 3 months old. I recall the week before the Buddy Walk®, he had just been fitted for his first set of hearing aids. He was still a peanut, having been born a month early weighing in at just 4 lbs. 14 oz. He was swimming in his Buddy Walk® t-shirt, and he slept through most of the day. It was magical, that day. I will never forget the feeling of walking into Villanova Stadium, everyone there for the same reason we were: because their lives have been touched by someone with Down syndrome. Each year, the same feeling comes over me when we enter the stadium, and to describe it is almost impossible. The closest I can come is to say it is like being lifted up into the sky, and feeling what it might be like to fly. That is how the energy in that stadium, the love that is shared on that day, and the sight of all that joy and celebration of the human spirit all of it can make a person feel. Since then, Team Sean has grown, and our dedicated contingent still comes from far-flung states just to be with us for Buddy Walk® day. It is gratifying to think this team has together raised more than $10,000 in four years. More important, to me, is the unconditional support and acceptance of Sean by our family, friends and community. They have inspired me, by their willingness to be part of an ongoing effort to increase the ability of people with Down syndrome to participate as valued members of society. Like us, they see all the promise in Sean and others like him. And, of course, Sean inspires me with his developmental mountain climbing, baby step by baby step, every single day. He is, quite simply, extraordinary. So each year, I can't wait for the Buddy Walk®. I wonder whether it is the collective joy of that celebratory group who are linked together by Down syndrome, or if it is the very people we are there to support those with Down syndrome, like Sean, who make it so magical. I tend to believe that somewhere on that extra chromosome is the key to something elusive that the rest of us have to spend a lifetime trying to find. Unless, of course, we are lucky enough to be living with that gift each day, allowing us entry into a very "special" world indeed. If you don't happen to have someone who has Down syndrome in your life, come find us at Villanova Stadium on October 2nd. We'll introduce you to Sean and his friends. And who knows? You may even meet me, soaring up in the clouds.




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nicole stalnecker, United States, PA
04/16/2012 11:16:35
Loved the phrase you used about the extra chromosone being elusive and maybe we spend our whole lifetime trying to find it unless we live with someone who lets us into that 'special' world

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