Monthly Archives: November 2011

In His Element

Let me preface this blog entry by saying this: It is practically impossible to watch any child with a disability participate in physically challenged sports without being inspired. The sheer fact that they choose to play at all means they have a leg up on determination and perseverance, probably more than any of the world’s able-bodied athletes.

Of course, it’s not for everyone: Some kids play one round of wheelchair basketball, find a giant blister on their palm, and call it quits. And that’s fine—like I said, it’s not for everyone. But every once in a while we get a kid (or young adult) so determined and so willing to push his limits that they can’t help but stand out in our minds. As director of the Bennett Institute for Physically Challenged Sports at Kennedy Krieger, I’m fortunate to have met many such players. Like Jorge Medrano.

Jorge was born with spina bifida, a birth defect that involves incomplete formation of the spinal cord. As a result, he typically walks with braces. Don’t let them fool you though: This young man has skills.

Of course, when you think of so-called natural athletes, you probably imagine the Kobe Bryants and Derek Jeters of the world, not a kid who needs special equipment to walk. But perhaps it’s his very ability to rise above his disability and score that makes Jorge the quintessential natural athlete that he is. In fact—in addition to playing wheelchair basketball and sled hockey, Jorge has been an integral member of our softball team, so much so that he made the national all-star team, where he proved an outstanding first baseman. It seems that whether he’s catching a ball or shooting it, he’s in his element with a ball in his hands. Continue reading

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No Limits

Mohammed and Ahmed Al-Ali are brothers from Ras Al-Khaimah in the United Arab Emirates (UAE). Both of their lives have been greatly affected by a diagnosis of spinal muscular atrophy (SMA), a condition that brought them half-way around the world in search of help.

SMA is a rare disease in which nerves in the spine become progressively weaker. In its most severe form, SMA can cause death in infancy. However, many children with milder forms can live long and fulfilling lives, despite challenges with scoliosis, breathing and the likelihood that the need for a wheelchair will limit their mobility.

Although Mohammed and Ahmed struggle at times with their limited mobility, I know that their futures are very bright and far from limited.

I first met Mohammed, the eldest of the pair, in 2009 when he came to Kennedy Krieger’s inpatient unit after a successful spinal fusion surgery at Johns Hopkins Children’s Center. The first thing I noticed about Mohammed was his smile; the second was his flawless English. But perhaps the most noticeable thing was Mohammed’s amazing family. Continue reading

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On the Brightside…

It’s no secret in the developmental disorder world that individuals with Down syndrome are often among the kindest, most precious individuals to walk the planet. In an online article published by the National Association for Down Syndrome, one academic researcher wrote that, if people with Down syndrome ruled the world, “affection, hugging and caring for others would make a big comeback.”

Working at Kennedy Krieger—both as director of Social Work and of the Brightside Program for individuals with Down syndrome—I am so incredibly fortunate to share in the lives of so many of these incredibly caring and unique individuals. Sure, everyone has their bad days, and those with Down syndrome are no different. But, in the grand scheme, their exuberance and caring demeanors make me feel so lucky to know them. And Alexandra Carter is no different.
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