Monthly Archives: April 2011

“Houston, we have a problem…”

One of my favorite movies is “Apollo 13”, a tale of astronauts who experience a near-fatal accident en route to the moon. With the help of mission control in Houston, they ultimately survive a harrowing attempt to return to earth alive. For them, failure was not an option.

For most of 2009, Daniel was a typical 13-year-old boy who enjoyed hanging out with his twin brother and loved playing with LEGOs. But that Fall, he caught H1N1 Influenza and never fully recovered. There was no explanation for why the influenza virus had hit Daniel so hard. He grew very weak, and, unable to eat, he needed a gastrostomy tube to provide the nutrition and calories his body demanded. Severe pain kept him out of school, out of his life, for over a year. His parents desperately wanted help for their bedridden son, who spent most of his time curled up in a fetal position. They saw doctor after doctor in New York, but nothing seemed to help.

Daniel’s last hope was Kennedy Krieger Institute. And so, in a final attempt to relieve the chronic pain that was ruining his life, he and his family came to Baltimore.

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Finding Validation Through Hard Work

When I first started working with Kevin Sargent, he was a freshman in high school, and I was his science teacher. I knew even then that he was incredibly bright young man, who possessed immeasurable potential and a wealth of information that lay stored away, almost dormant.

But, as is so common in students on the autism spectrum, he struggled to apply his knowledge in the real world.

Diagnosed with Asperger’s syndrome in elementary school, Kevin scored well on tests. However a huge part of high school learning takes place not at a student’s individual desk, but in groups that require participation and engagement. For kids like Kevin, that presents a significant challenge.

And so, for a long time, we struggled to convince Kevin to come out of his shell and join the class. He preferred solo activities and hated classroom tasks that required cooperation with others, like lab assignments. He struggled with public speaking even in small groups, didn’t want to try new things, and he couldn’t pick up on the simple social cues that many of us take for granted. You could tell that there was tremendous potential there—I never doubted his academic abilities. But there were times that many of us at the school worried about whether he’d ever be able to fully make use of that ability to build a future for himself.

That was Kevin then.

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Fear Is To Be Conquered

At Kennedy Krieger, we pride ourselves on “unlocking the potential” of children with special needs. It’s easy to visualize the meaning of this for a child with a developmental disability, who might learn new skills and walk or talk for the first time with the help of the team here. Still, when I first came to Kennedy Krieger to launch a center for muscular dystrophy, it wasn’t immediately clear to me what “unlocking potential” meant for the children and young adults in my care. After all, muscular dystrophy is a degenerative condition where children are born with normal function, but slowly lose strength and skills over time.

That was until I met Ben.

For Ben Cumbo, a diagnosis of Duchenne muscular dystrophy (DMD) meant a future in the spotlight – literally. As a National Goodwill Ambassador for the Muscular Dystrophy Association (MDA), Ben and his parents traveled around the country to raise awareness and funds. In fact, you may remember Ben spontaneously showing off his dance moves on national TV alongside comedian Jerry Lewis during the 1997 MDA Telethon. It was only a few years later that DMD finally robbed Ben of his ability to dance.

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A Life Changed

Though I’ve only known Donnell Jones for a few months now, he’s the kind of person you need only know for a few minutes before his charisma draws you in.

Donnell was injured in 1996, during a game of pick-up football. In one instant, a hard hit and a broken neck left him paralyzed and unable to stand or walk. He has limited use of his arms and hands, but he can sit up on his own, and we have been working hard in intensive therapy sessions to help him regain more function.

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