Stories about: our patients’ stories

Recognizing and treating an atypical case of Kawasaki disease

It was a Saint Paddy’s Day that Jake and his mother, Nancy O’Connor, will never forget. While everyone else was sporting green, Jake’s skin and tongue started turning red, and the whites of his eyes eventually turned yellow. It was a medical problem that eventually led him to Boston Children’s Hospital where he was diagnosed with an atypical case of Kawasaki disease, a rare condition that can cause a rash, red eyes and mouth, and other inflammatory symptoms.  Most importantly, Kawasaki disease can lead to serious complications of the heart, especially if not treated in time.

Difficult diagnosis

feverJake woke up that March morning not feeling well. His skin was itchy and irritated, his tongue was swollen and his forehead was hot to the touch. Being a nurse and mother, Nancy has seen her fair share of flus, colds and stomach bugs—but the moment she laid eyes on her son Nancy knew there was something more seriously wrong with Jake.

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Five things about living with Erb’s Palsy that you probably won’t find on Google

Kailyn Looby is 16-years old and has Erb’s Palsy; an injury suffered at birth that resulted in the permanent damage to nerves in her neck and shoulder. Despite the physical limitations of her disability, she enjoys soccer, hiking, swimming, rock climbing and kayaking. She loves music and wants to travel the world someday.

I’m a 16-year-old high school junior with a left brachial plexus injury (BPI). This injury has always been part of my life, and things got rough a few years ago. Here’s what I learned:

1. You need a good support system.

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You also need to surround yourself with supportive friends. I haven’t always had understanding friends, but when I got to high school, I met five of the most amazing, supportive people ever. That support makes all the difference. It makes everything easier knowing that you’ve got someone to back you up.

2. Meeting other kids with BPI is hugely important.

This injury has led me to connect with so many amazing people through organizations like the United Brachial Plexus Network (UBPN). I’ve met Paralympians and a man who summited Mount Everest. The other kids that I’ve met at Camp UBPN are so inspiring. I’ve made some lifelong friends. We compare hair styling techniques or surgery experiences.

It’s important, for me at least, to interact with people like me. No matter how supportive your friends and family are, the only people who can ever truly understand what living with this injury is like are other people who have it.

I’m not afraid to put myself out there when I’m surrounded by people like me. I tried archery at the last UBPN camp. I would have been much more hesitant trying it back at home, because I’d look different. It’s not something I can put into words—how it feels to be around people who get it.

3. Find your outlet.

Unfortunately, you can’t be at UBPN camp 24/7, so there needs to be an outlet. This injury can be frustrating, and it can make you angry, and sometimes it just feels so unfair. Find a way to let all the negative energy out.

My outlets are writing and music. I wrote down everything I was feeling. Getting it on paper helps me sort out what I am feeling. Music is my stress relief. When I have a bad pain day or am just frustrated, I plug in my iPod and jam.

4. Speak up.

I think it’s important that I have input in the decisions made involving my arm and treatment. That can go both ways though. There was a time when I refused to try anything, because I was convinced it wouldn’t work. Everything I had tried thus far had failed and I ended up in pain, and the slight chance that the newest idea would work wasn’t worth it to me.

It was important that I had some say in the decision-making process, but no one could convince me to take another chance. It’s a hard balance to achieve.

Also, don’t be afraid to educate people about the injury. It’s important to advocate for yourself. You’re going to have to explain it a lot—to classmates, to teachers, to coaches. I’ve got the spiel down pat. Speaking up has opened up a lot of doors for me. I’ve had the opportunity to speak for the Understanding Disabilities program in my town for several years. Last year, I had the privilege to speak as part of a panel at the John Hopkins Symposium in Baltimore.

5. The forecast is foggy, but the future is bright.

There is no way to know what this injury will throw at you. It’s bound to not be very fun sometimes. It took me three years to find a solution to my pain, but I found a solution, and so will you. The road to getting to the solution can be frustrating. There will be questions, especially when it comes time to drive, apply for a job or apply to college. You’ll figure it out. I’m going to risk sounding extremely cheesy saying this, but you can do whatever you want to do. This injury won’t hold you back from doing anything, as long as you don’t let it.

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Adopted from Ethiopia, his African siblings travel to Boston to save his life

By Irene Sege

Barry-familyOne morning in 2006, Aidan Barry showed his wife, Midori Kobayashi, a newspaper story on the plight of the lost boys of Sudan and children affected by the diamond war in Sierra Leone. Little did the Stratham, N.H., couple know that this moment at their breakfast table would lead them to adopt a 6-year-old boy from Ethiopia whose desperately poor parents could not support all their children. Neither could they predict that, seven years later, their adopted son would develop a life-threatening blood disorder connecting his adopted family and birth family for a stem cell transplant to offer him the best chance of cure.

Behaylu Barry has severe aplastic anemia, a bone marrow failure syndrome that prevents his marrow from producing the red blood cells that carry oxygen, the white blood cells that fight infection and the platelets that promote clotting.  He was diagnosed in February after suddenly suffering nosebleeds and extreme fatigue, never making it to the first practice of the competitive soccer team that had just selected him.

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Technology, teamwork and telemedicine to the rescue

DuvallMelodyAs a critical care physician, there’s not much Boston Children’s Hospital’s Melody Duvall, MD, PhD, hasn’t seen, but even she is surprised by a case from time to time.

“Cameron Shearing’s story is truly amazing,” she says. “It’s a real testament to the power of technology and teamwork in crisis.”

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