Stories about: brachial plexus

Grabbing the reins her own way

Chloe, a roder rider with brachial plexus, rides a horse during a barrel race.
Chloe Neff, a rodeo rider with brachial plexus birth palsy, will compete in barrel racing world championships. 

Barrel racing isn’t for the faint-hearted, that’s for sure.

In this rodeo event, horses and riders whip around barrels at lightning speeds. Tails flourish in the air and muscles ripple. Powerful horses are coaxed by their riders to spin around each barrel as quickly as possible.

One such duo, 16-year-old Chloe Neff and her horse, Raise a Glass Dancer, will soon be on their way to barrel racing’s world championships.

“If you keep trying and working at it, you can do anything you want to,” says Chloe. Her record for completing a barrel course is 16.6 seconds. “Right now, Glass and I are working toward a 15.”

In the Perry, Georgia, stadium where barrel racing world championships will be held later this year, Chloe’s parents may be the only people to notice anything seemingly different about Chloe, as she and Glass flash past the stands. That’s because Chloe, who has received care from the Brachial Plexus Program at Boston Children’s Hospital since she was 5 months old, sustained damage to her left brachial plexus nerve when she was born. The injury jeopardized Chloe’s use of her left shoulder, elbow, wrist and hand.

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May highlights: Overcoming brain hemorrhage, brachial plexus + more

Catch up on what you may have missed on Thriving last month. Our staff takes a look back at a few of this month’s favorite posts.

A sister’s words: The athlete who couldn’t be tamed by a brain hemorrhagecarly6

Carly is a superstar athlete, running a 5:32 mile at the young age of 14. Her heroes include Tom Brady, Malcolm Butler and Boston Children’s neurosurgeon Dr. Ed Smith. After emergency surgery to repair a brain hemorrhage Carly’s career aspirations have shifted, and the Cape Cod track star is now pondering the world of neurosurgery. Read A sister’s words: The athlete who couldn’t be tamed by a brain hemorrhage.

Tuberous sclerosis: Clinical trial may be what halted Charlotte’s seizures

Seizures tuberous sclerosis
Charlotte participates cheerfully in her exam with Jurriaan Peters, MD.

Four-year-old Charlotte has a rare genetic condition called tuberous sclerosis complex (TSC). When medications failed to control her seizures, her family turned to Dr. Mustafa Sahin and Dr. Jurriaan Peters for answers. She qualified for a clinical trial that was focused on the TSC defect. Today she is virtually seizure-free and is starting kindergarten this fall. Read Tuberous sclerosis: Clinical trial may be what halted Charlotte’s seizures.

Ask the expert: Can kids get melanoma?

sunHow much sun is too much? Dr. Carlos Rodriguez-Galindo, clinical director of the Solid Tumor Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, answers your family’s melanoma questions. Read Ask the expert: Can kids get melanoma.

Never say never: Gymnast with brachial plexus soars

Photo credit: Robert Marra
Photo credit: Robert Marra

17-year-old Julia whips around the uneven bars with apparent ease and effortlessly flips across the spring floor. It’s hard to believe that the captain of the Winthrop high school gymnastics team was diagnosed with brachial plexus birth palsy as a baby. Dr. Peter Waters cared for her from infancy and completed surgery to improve her range of motion and help her become the active teenager she is today. Read Never say never: Gymnast with brachial plexus soars.

 

Parent Q&A: Helping a daughter through breast reduction surgery

 


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From unwanted attention to physical symptoms to dress shopping, her large breasts, or macromastia, made many things difficult during Mackenzie Langan’s high school years. The 18-year-old recently underwent breast reduction surgery to drop from a G cup to a C size. Her experience was profiled on ABC’s Nightline, and her mother reflects on the experience. Read Parent Q&A: Helping a daughter through breast reduction surgery.

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Never say never: Gymnast with brachial plexus soars

Photo credit: Robert Marra
Photo credit: Robert Marra

Shortly after Julia Duplin was born, doctors diagnosed her with brachial plexus birth palsy; some of the nerves running from her upper spinal cord to her left arm had been damaged during birth. The early prognosis was that she would have some level of disability in her left arm.

Seventeen years later, she’s captain of Winthrop High School’s gymnastic team. She whips around the uneven bars with apparent ease and effortlessly flips across the sprung floor. How did Julia journey from an awkward toddler who crawled using only her right arm to a gymnastics powerhouse?

From the beginning, Julia’s parents Dianne and Joseph committed themselves to her recovery, encouraging her to do as much as possible and not letting her brachial plexus injury hold her back.

“Many brachial plexus patients go on to excel in sports despite the limits of the affected arm,” says Peter Waters, MD, chief of Boston Children’s Hospital Orthopedic Center. “If a child has the drive, talent and passion for sports, a brachial plexus injury won’t hold her back.”

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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.

Kailyn Looby resize

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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