Category Archives: Miscellaneous

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

Posted in Miscellaneous, Spinal Muscular Atrophy | Tagged , , , , , | Comments Off

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.
Continue reading

Posted in Down Syndrome, Miscellaneous | Tagged , , , , , | Comments Off

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

Posted in Miscellaneous | Tagged , , , | Comments Off

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!?!

Continue reading

Posted in Developmental Disabilities, Miscellaneous | Tagged , , , , | 3 Comments

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.

Continue reading

Posted in Genetic Disorder, Hypotonia, Miscellaneous | Tagged , , , , , , , | Comments Off

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

Posted in Miscellaneous, Spinal Cord Injury | Tagged , , , , , | Comments Off

Beyond Limitations

In Rosalind Chen’s home country of Taiwan, Osteogenesis Imperfecta (OI)—commonly referred to as brittle bone disease—is so rare that some physicians haven’t even heard of it, let alone been properly trained to diagnose and treat it. Consequently, the disease—which not only causes extremely short stature in patients, but also makes them highly susceptible to broken bones—has only recently gained attention there.

Rosalind herself has a severe form of OI. Aside from having brittle bones, her height limits her ability to move around and she uses two crutches to improve mobility. She is always at risk for a fracture should she stumble or have an accident. But she doesn’t let that stop her from living a full and active life.

I first met Rosalind earlier this year, when I traveled to Taipei, Taiwan, to attend and speak at a conference that she had organized to in hopes of spreading awareness about brittle bone disease and promoting better care for patients like herself in Southeast Asia. Since meeting her, I have been amazed at her complete mobility and her ability to interact with others. It’s as if she has no disability.
Continue reading

Posted in Miscellaneous, Osteogenesis Imperfecta (OI) | Tagged , , , | Comments Off

Running The Show

As a special education teacher in the industry program at Kennedy Krieger High School, I have an opportunity to see our students in a different light than many of my fellow teachers. While they help the kids tackle academic skills and life skills, I teach work readiness skills in Café James—a unique environment where we arm students with critical job skills for careers in the hospitality and food service industry.

This marks my third year teaching in Café James. It’s a huge reward to watch my students become more and more independent in their work. One class, in particular, impresses me daily because I’m especially proud of their progress in the face of the obstacles their diagnoses present. If you walk into the café during this period, you’ll find me grinning with joy at my students who are “running the show” with minimal support. This group of students is what we call an Academy 3 class. Students in this Academy present the most significant need for special education or related services support in a classroom setting, with a disorder or disability which has a significant impact on academic or cognitive function.

Each student has a specific role in Café James, which complements their abilities and offers them opportunities to overcome their personal challenges. The students must each excel in their roles to successfully run the café for an entire class period. Let me take you through a typical day in Café James during fifth period. Continue reading

Posted in Autism Spectrum Disorder, Intellectual Disability, Learning Disability, Miscellaneous | Tagged , , , , , | Comments Off

25 Years of Dedication

In my 21 years with the Down Syndrome Clinic at Kennedy Krieger, I’ve been privileged to meet many children with Down syndrome and watch them grow up to lead fulfilling and independent lives. I feel lucky to be a part of such an inspiring community of families.

When I was first appointed as director of the Down Syndrome Clinic, I was a little surprised when I was told quite frankly that I must attend the clinic’s annual event at the airport, a race organized by Wayne Malone, whose son has Down syndrome. Such a mandate seemed curious to me, but when Pat Winders—a former employee who was one of our clinic’s biggest advocates in the early days–tells you to be somewhere for the clinic, you show up. I didn’t know all of the details then, but what I was about to take part in for the next 21 years continues to inspire me in my work today. I would like to take a moment to share with you the story of Wayne Malone, a man who singlehandedly formed a community of people and resources for those affected by Down syndrome. Continue reading

Posted in Down Syndrome, Miscellaneous | Tagged , , , , , | Comments Off

Try, try again

I have never met a kid who tries so hard.

Even with the limited abilities he has, I have never seen Matthew Slattery sad or upset. If he ever feels sorry for himself, he never shows it. And he never seems to show up to therapy without a smile.

Of course, all of that is well and good—it makes him a pleasure to work with and helps everyone involved in his care to remain positive and hopeful. But it takes more than positivity to produce outcomes: It takes determination and perseverance—traits that Matthew has in abundance. Continue reading

Posted in Miscellaneous, Traumatic Brain Injury | Tagged , , , , , | 1 Comment