Stories about: Our patients’ stories

Wounded warriors show 10-year-old amputee that life without a limb is limitless

wounded warrior and child amputee show off one-armed pushupsAbout the blogger: Ten-year-old Jen Castro, from New Fairfield, Conn., was born a below-the-elbow amputee and has been a Boston Children’s Hospital patient for most of her life. She is an avid softball player.

Most kids dream of going to summer camp. But I’m not most kids. I was born a below-the-elbow amputee.

I don’t really like summer camp. It was never easy for me to be around other kids who don’t know me. I get stares, endless questions, and then whispers and comments: “Look at that girl, she’s missing her arm.”

I’d rather not attend.

Wounded Warrior Amputee Softball Camp

So you can just imagine what I felt like when my mom told me about a camp that was open only to kids who were missing limbs. That all the instructors would be missing limbs too. For a moment, she had my attention when she told me it was a softball camp, because I love softball. But only for a moment!

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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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One patient’s story: my toddler’s head injury

Kate Gray is the mother of William, an active toddler whose serious fall almost ended in tragedy.

I call William my spirited child. Like many 3 year-olds, he loves to run and jump, and does it without the slightest sense of fear. His boundless energy has always been one of his most endearing features, but in a split second, it also almost took him from us forever.

Up, up and away! Like many toddlers, William is a ball of energy

A few days before Christmas, my husband Mark and I had some last minute holiday chores to do so we decided to beat the rush by heading out early in the morning. As we walked out the front door William and I were standing side by side, just inches from each other. Suddenly, he turned to go back towards the door and somehow lost his footing. He fell backwards off the steps and hit the back of his head on the brick walkway as he landed. As I scooped him up to quiet his crying, I didn’t see any sign of injury. No goose egg or bump, not even a scratch. In less than five minutes he had stopped crying and we had begun our busy day.

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Saving Sam: specialized liver transplant gives newborn a second shot at life

For most first-time parents, the initial few weeks of caring for a new baby can be nerve-wracking. But, the first month of parenting for Kevin and Maureen Sturtevant was nothing short of terrifying.

Days after coming home from the hospital, their son Sam refused to eat and felt cold to the touch. Worried, the Sturtevants took Sam to their local hospital where he was quickly admitted. In the coming days, Sam was diagnosed as having an enterovirus that was affecting all his organs, especially his liver, which was beginning to fail.

Sam’s condition continued to worsen. It soon became clear he needed higher subspecialty liver care than what was available in his local hospital, so his care team arranged for the family to be transferred to Boston Children’s Hospital’s Center for Childhood Liver Disease.

Moments after they arrived in Boston, the Sturtevants met a whole team of people who would be taking over Sam’s care, including Center for Childhood Liver Disease Associate Director Scott Elisofon, MD. “We met everyone, from neonatologists to nephrologists. It was a lot to take in at first, but Dr. Elisofon acted as our point person, which made things less overwhelming,” Kevin says. “And even though we spoke mostly with him, we always knew there was an entire team of people supporting Sam and us. It made a difficult time a little easier.”

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