Tag Archives: Kennedy Krieger Institute

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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The Reality of Hope

Every day I work with individuals whose lives have been drastically changed by paralysis. My job is twofold: first, to provide innovative therapies to help promote recovery and, second, to inspire and motivate my patients to push through the difficult times–sometimes as the encouraging cheerleader, and other times the demanding coach.

In my job, I’ve come to realize that we’re each gifted with a unique set of skills and abilities that allow us to contribute to the world around us. If we’re lucky, perhaps we can even use those talents to inspire and motivate others. But when I started my career in the International Center for Spinal Cord Injury at Kennedy Krieger Institute, hoping to make a difference in the lives of my patients, I never expected that my patients would be the ones who constantly inspire and motivate me.

Brian Keefer is a patient whose strength, determination and genuine love for life inspire me in ways that are hard to put into words. In 2008, Brian was paralyzed from the neck down after a gymnastics flip gone awry. Soon after his injury, Brian and his family began making the 140-mile trip from to Kennedy Krieger every day for two weeks during his school breaks. Here, during bouts of intensive therapy, Brian spends five to six hours daily working with our team, all while maintaining a smile and exerting 100-percent effort.

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Autographs

After graduating from college in 2007, I moved to Maryland and learned about Kennedy Krieger’s special education program and knew instantly that I wanted to work there. Kennedy Krieger schools are geared towards preparing students to transition back into their communities and lead successful lives after graduation. I have been working at Kennedy Krieger High School (KKHS) for three years and my students never cease to amaze me. Today, I want to tell you about one of those students whom I’ve known from the start and has impressed me in ways I couldn’t have imagined when I first met him.

I was lucky enough to meet DeVante—a shy, reserved student with an autism spectrum disorder—during my first year here at Kennedy Krieger. When I first started at KKHS I was a teacher’s assistant in an Academy II classroom. During my first week, DeVante visited our classroom and asked to speak with the new staff member, Ms. Bates. He approached me with his head down and in a soft voice, he asked me to sign his “autograph book”. Timidly, DeVante explained that signing the book authorized him to share drawings with that person throughout the school year. As a teaching assistant, I was eager to get to know not only the students in my classroom, but all of the students at KKHS, so of course I said yes! This marked the beginning of learning exactly who DeVante is and who he wants to be. Continue reading

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Walk a mile in their shoes…

I am blessed with two happy, healthy kids. My boys, Will and Tom, have never had major medical issues. My days, however, are filled with children facing tremendous challenges, so when my youngest son needed surgery for the first time, it was an opportunity for reflection.

Like me, Tom had huge tonsils and was often sick during the winter with the dreaded strep throat. Our friendly ear, nose and throat surgeon at Johns Hopkins, Dr. Stacey Ishman, recommended a tonsillectomy and adenoidectomy. As a physician, I already knew the risks of surgery. I know that many things can go wrong during an operation. I have seen firsthand the unexpected complications of routine medical procedures. In reality, there’s no such thing as a “routine” surgery. Continue reading

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Twelve Hours

As a weekend nurse on the inpatient unit at Kennedy Krieger, I work 12-hour shifts every Saturday and Sunday, caring for children with challenging injuries and disabilities. My own children, at 11 and 15 years old, spend their weekends engaged in a variety of fun activities, free from the grind of the school week. Last year brought a move to a new home in southern Maryland—Calvert County to be exact—which doubled my commute time to 90 minutes each way.

I often meet new people at my children’s school, and, as we get to know each other, we eventually come to the inevitable question of where I work. I’ve had this conversation enough times that I know what comes next. I tell them that I am a nurse—not terribly unusual since most people know someone in the medical field. Then, I tell them that I work at Kennedy Krieger… in Baltimore. The actual response may vary, but the implication is always the same: Why!?!

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Miracle for Megan

I first met Megan Miceli when she was 6 months old. She was a beautiful little girl with blond hair and blue eyes and an infectious smile that reached from ear to ear. But when her parents noticed that Megan wasn’t hitting milestones at the rate her siblings had, they grew concerned and brought her to Kennedy Krieger.

With weekly physical therapy sessions and her mother diligently working with Megan at home, she slowly began making strides in her motor skills. In the meantime, an extensive medical workup revealed she had hypotonia and a gene microdeletion, which was the root of her medical problems. The gene deletion is so rare that there have only been six reported cases since 2009. In addition she was also recently diagnosed with episodic hemiplegia, another disorder that affects 1 in 1 million people. Without warning, Megan can experience an attack of paralysis on the left side of her body multiple times per week, each lasting between 5 and 20 minutes.

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No Ordinary 4-year-old

Working on the inpatient unit of the International Center for Spinal Cord Injury at Kennedy Krieger Institute, I’ve had the opportunity to work with so many incredible patients and families. I am often the first therapist the family has met since their child (or young adult) was first diagnosed with a spinal cord injury. In this role, I get the opportunity to help turn a challenging and traumatic situation into one of hope and recovery. It’s a privilege to work with these families during this emotional time of transition.

This past May, I met the Jermano family, to whom I would like to dedicate this blog. Their quest to create a fulfilling life for their daughter Mia, along with their continuous hope for her recovery, is truly an inspiration to my work.
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Pretty in Pink

It’s a classic backyard image: a kid flying through the air on a swing set.

Aside from the occasional bumps and bruises, it’s also not something that seems especially fraught with danger. And in truth, although swing sets and playgrounds are often cited for safety concerns, serious injuries remain relatively rare.

Rarity, however, seems to make tragic accidents an even tougher pill to swallow.

It started with Mikaela Deenen innocently swinging in the backyard. But, unbeknownst to her or her family, torrential rains here in Maryland had caused the swing set to come loose from the ground. When it toppled over, the swing set landed on top of Mikaela, crushing her spine. Continue reading

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