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.
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.
Wayne Malone, Founder & Director of the Annual BWI Run/Walk
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.
On August 20, 1980, the Malone family welcomed a son with Down syndrome. Immediately, Wayne (the boy’s dad) sprang into action and sought out any information about their son’s needs. Unfortunately, in 1980 there were no networks in place for families like the Malone’s, and they were limited to outdated materials from their local library.
Update: A while back, you heard about Matthew Slattery from Dr. Suzanne Prestwich.(Read the original blog about Matthew here.) Since then, Matthew has made some huge strides in therapy. And, luckily for us, we’ve had time to get to know him even better, allowing us to see what makes him tick—and how his determination and positivity overflow into his therapy and the lives of those around him.
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.
If I had a magic wand, I would use it to prevent the illnesses and accidents that lead children and young adults to the inpatient rehabilitation unit at Kennedy Krieger. I would stop cars from crashing. I would stop cancer cells and tumors from growing. I would stop diseases that cause paralysis.
Unfortunately, my medical degree didn’t come with the additional title of Fairy Godmother. If it did, I could have used my magic wand on October 19, 2008. On that day, I would have stopped Matthew Silverman, a vibrant young teenager who loved music and fishing in his home state of South Carolina, from becoming ill.
His illness was abrupt and devastating. Matthew himself knew something was wrong as his body showed the early signs of transverse myelitis. His arms and legs felt weird. He rapidly became unable to breathe as his paralyzed body suddenly could not provide him with enough oxygen. He asked for someone to call 911. Matthew suffered not only a spinal cord injury, but also anoxic brain injury, on that terrible day.
Miracles happen every day at PACT. Kendal is living proof.
Weighing just 1 lb., 1 oz., when he was born at 29 weeks, Kendal and his parents fought and prayed a lot during his first five months, which he spent in the hospital. Low levels of amniotic fluid caused intrauterine growth and forced his mother’s doctor to deliver the baby boy early, both for his health and his mother’s.
It wasn’t until five months later that he was released from the hospital. When he came home, his mother took two months off of work so she could manage his multiple medications, heart monitor, doctor’s appointments, and sometimes challenging feedings. Because of his early birth and small size, he had multiple health and developmental problems. All of this, plus adjusting to life with a new baby!
Working as an outpatient physical therapist at Kennedy Krieger’s International Center for Spinal Cord Injury (ICSCI), I’ve had the privilege of getting to know many individuals who motivate and inspire me on a daily basis. I often try to put myself in their shoes, wondering how I would cope with a catastrophic injury such as paralysis. Although I have a hard time answering that question myself, I have encountered an individual whose strength of character sets an example of how I can only hope I would endure such a situation. That individual is 22-year-old Peter Exner.
A motor vehicle accident in December of 2009 caused spinal fractures in the thoracic and lumbar portions of Peter’s spinal column, resulting in damage to his spinal cord. This injury left him paralyzed from the waist down. In additional to the spinal cord injury, he also had other life-threatening and painful injuries such as internal bleeding, rib fractures, collapsed lungs, and both arms broken. After surgeries to stabilize his spine and arm fractures, he began the grueling process of rehabilitation.
Most soccer players, especially goalies, are known for their fearlessness. Unfortunately their aggressive play and love for the game can translate into time spent off the field, recovering from a concussion.
I first got to know Chris–a charming, hard-hitting soccer goalie who also loves the guitar–after he was sidelined by a concussion. He was hit in the head when, while blocking the goal, he dove to the ground, and the ball struck him in the face–hard–as he made the save. Because of the severity of the blows and his neurological signs, he was airlifted off the soccer field and flown to the Johns Hopkins Hospital, as his stunned teammates, spectators and parents watched.
A short time later, Chris came to see us in Kennedy Krieger’s Sports Neurorehabilitation Concussion Clinic. He came cheerfully, even though he was still experiencing symptoms of his concussion. Still, he wasn’t his usual ball of energy, and he was bothered by frequent headaches. As you can imagine, he was eager to return to the game—but in a safe way–and his parents needed help figuring out when Chris could safely return to the sport he loves.
I wouldn’t be surprised to look up the definition of “determination” in a dictionary, only to find a photo of a smiling John “Alex” Curtis.
On the day he was admitted to our inpatient rehabilitation unit, his mother told me, “You know, Alex is a very special child.” Of course, all of us parents think the same about our kids. But throughout his time with us, Alex proved his mother right.
Alex came to Kennedy Krieger Institute for intensive inpatient rehabilitation after he had an operation elsewhere to fix a chest wall abnormality called Pectus Excavatum. If severe and untreated, the condition can affect the ability to breathe. Unfortunately, a complication occurred during the procedure and Alex woke from surgery unable to walk.
During the two years that I have worked at Café James—a classroom at Kennedy Krieger High School that teaches students job skills in the hospitality industry—I’ve been so privileged to work with Jerome. His shining personality is always hard to miss, even in previous years, just in passing, when he would walk down the hallway past my homeroom. At first, I didn’t know Jerome at all, but I instantly liked him a lot.
As time went on, I watched him interacting with his peers in the halls and in the cafeteria, and I began to realize what made Jerome so special: He is one of the kindest, most truthful, and heartfelt people there is. Everyone likes him and he is friendly and respectful to everyone he meets.
After he was diagnosed with a learning disability, Jerome was enrolled into Kennedy Krieger School’s Fairmount Campus. Now about to graduate from Kennedy Krieger High School, he has been working hard ever since.