Simple Steps

Last Monday was a big day in the life of one of my patients: He graduated from the University of Maryland Baltimore County (UMBC) with a degree in political science. His parents and siblings were there to applaud as he accepted his diploma and turned his tassel. It was an experience that thousands of college students will have this month, but for Matt Courson, this already special day was momentous. 

Before a crowd of thousands, Matt lifted himself from his wheelchair and traveled across the stage on his own two feet with the help of a walker and leg braces. It wasn’t the first time he had walked since a spinal cord injury left him paralyzed from the chest down (our team in the International Center for Spinal Cord Injury has been working hard on this with Matt in therapy), but it marked the realization of a goal that others had told Matt would never happen.

CNN was even on hand to cover the momentous walk; You can watch their story here.

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A Different Kind of Adventure

We see a lot of special and inspiring families at Kennedy Krieger. Shannon and Kurt Berman, along with their son Cooper, are perfect examples.

Throughout the pregnancy with Cooper, and from the time he was born, his parents were determined to give him a multicultural upbringing. Having lived and worked all over the world themselves, they strongly believed in the importance of raising him in different countries, submerged in different cultures and adventure. But when Cooper was diagnosed with autism, they worried that their plans would have to be laid aside and that their goal of raising their son internationally might be impossible.

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They Know They Can

In April, the Bennett Blazers, Kennedy Krieger’s wheelchair basketball team, and I travelled all the way to Denver, Colorado for four days to compete in the 2011 National Wheelchair Basketball Association’s (NWBA) National Championships. We felt prepared—we’d been a strong team all year with a solid defense that anticipated each other’s moves.  We were also the only team that had brought just six players to the tournament, which left us with only one substitute—a fact other teams seemed to be more concerned about than my players. They were ready to play the whole game no matter what, and they did.

I had complete faith in the team and their abilities, but I couldn’t have predicted their dedication, composure and confidence throughout some of the hardest minutes of basketball they had ever played. It was a nail-biter all the way to the end. Here’s a play-by-play:

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Triple the love

Anyone who decides to open their homes and their hearts to foster a child with special needs obviously has a lot of love to give and a clear desire to use it to help children. 

As a social worker with Kennedy Krieger’s Therapeutic Foster Care program, I’m fortunate to meet so many kind and loving individuals who simply want to provide loving, stable homes for children in need—some with multiple medical or behavioral issues. Sometimes, one of those families decides they want to commit to a lifetime of caring and become a forever family to a child who desperately needs just that. 

One such family are the Mackels, who have not only fostered multiple children, but, six times, they’ve have done so with the goal of adoption. While their decision to foster and adopt children with special needs deserves recognition, one factor makes their situation even more unique: Three of the little girls (adoptions numbers three, four, and five) are triplets.  

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Can I Play With That Nerf Gun?

It was almost three years ago when I met Noah Hanssen for the first time; his mother wheeled him into our therapy gym and I introduced myself as his new physical therapist. I wanted him to feel comfortable and safe – after all, new people and places can be intimidating for an 8-year-old, especially one in need of intensive therapy. And I’ve learned over the years when working with kids, sometimes we need a bit of a “warm-up” period before they show me their true personality. 

But not Noah. Instantly I could tell that he is bright, adventurous, and active. His smile won me over in seconds, as he asked his most important question during our evaluation: “Can I play with that Nerf gun over there?”

Noah and I became a team over the next few months. Always fearless and unquestioning, he was motivated to try anything I asked of him, just so long as it was fun. He challenged me to get creative and cleverly disguise his therapy as rambunctious activities that any boy his age would love. 

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“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. Continue reading

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Finding Validation Through Hard Work

When I first started working with Kevin Sargeant, he was a freshman in high school, and I was his science teacher. I knew even then that he was an 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.

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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.

What inspires me about Donnell is his spirit—always smiling, always upbeat, and always looking for the good in every situation. As a teenager, Donnell made some bad life choices that got him into trouble. And so his injury changed his life in more ways than one. Donnell uses the bad decisions that he made long ago, and the devastating injury that he sustained, as a tool to mentor young people, helping them to make smart and healthy choices in their own lives. He doesn’t let his past hang over his head like a black cloud; He doesn’t allow it to define who he is today.   

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Matthew’s Posse

When I first learned of Matthew Slattery’s story, I had the same reaction that anyone would. The circumstances of his injury can only be described as heartbreaking, a feeling that even physicians aren’t immune to. And with Matthew, it all felt especially close to home for me.

Matthew was 12 years old when, while traveling home to Baltimore from visiting family in Ohio, a horrific motor vehicle accident changed his life forever. 

His mother Susan, a professor of Mathematics at Stevenson University, died at the scene. His older brother sustained multiple injuries. Meanwhile, Matthew fought for his life, but he ultimately survived the accident with a very severe traumatic brain injury. His father, Ed, was not traveling with his wife or his sons, and received the tragic news by telephone. 

As a mother, I can only imagine receiving that phone call.

Matthew was soon transferred from a hospital in Ohio to the Pediatric Intensive Care Unit at Johns Hopkins Children’s Center.  Eventually, he was stable enough to be admitted to the Inpatient Rehabilitation Unit at Kennedy Krieger for intensive brain injury rehabilitation.  

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