Stories about: cerebral palsy

Elijah laughs: Augmentative communication device helps boy with cerebral palsy

augmentative communicationA computer voice utters a simple statement. Sometimes, it’s “My name is Elijah.” Other times, “My parents are Brian and Leah,” or “I feel happy.”

For the first time in his life, Elijah can tell his mother, ‘Yes, I want a hug.’

Another phrase — “I love the Patriots” — is often repeated.

And a brown-eyed, curly-haired kindergartener’s eyes light up. He smiles and laughs out loud.

It’s a whole new world for 5-year-old Elijah Gauthier, says his mom, Leah.

Leah and her husband Brian have taken Elijah, who has severe cerebral palsy and is non-verbal, to the Augmentative Communication Program at Boston Children’s Hospital at Waltham since he was a baby.

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Catching up with Hunter: On the fast track

ACE Kids
Hunter, Congressman Poliquin and Madison

A few months ago, Hunter VanBrocklin was barely managing a 1 mile-per-hour pace on the treadmill. That was before his surgery to treat hip dysplasia.

His surgeon, Dr. Benjamin Shore of the Boston Children’s Hospital Orthopedic Center, cautioned Hunter that it could take as long as one year to recover his pre-surgery pace.

“I went past 1 mph already. Say good-bye,” brags Hunter, who’s not only managing a brisk 3 miles-per-hour pace, but also recently returned from a trip to Washington D.C. for Family Advocacy Day. The annual event brings families from children’s hospitals across the U.S. to the capital to meet with their senators and representatives to share their medical stories and encourage lawmakers to improve access to high-quality pediatric care.

This year, Boston Children’s staff and families sought to secure sponsorship for the Advancing Care for Exceptional (ACE) Kids Act of 2015, a bill that makes it easier for children with medically complex conditions who rely on Medicaid to get the care they need at children’s hospitals, especially when they have to cross state lines.

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The real story behind the Amazing Curb Climber

I want to be an author or librarian when I grow up. I like to read all kinds of books — fiction and non-fiction and fairy tales. I want to write fairy tale books for children and young adults.

You can imagine I love the library, but going to the library can be tough for me. I have cerebral palsy, which means I don’t get around as well as some other kids. I rely on a walker for support.

In some places, like the library in my town, the ramps are far away from handicap parking and the entrance to the building.

It would be SO much easier if my walker was more like an all-terrain vehicle and could go over curbs or stairs.

When I was 7 and in 1st grade, Dr. Benjamin Shore, in the Boston Children’s Hospital Cerebral Palsy Program, did a double hip osteotomy to help me walk better, and I had Botox and phenol injections to help with spasticity. I spent a week at Boston Children’s Hospital and four weeks not bearing weight and even more time going to physical therapy.

I had a lot of time to think. This was right around the time of my school’s Invention Convention, which is like a science fair for inventors.

That’s when the idea for the Amazing Curb Climber was born.

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Faces of the Boston Marathon team

Miles for Miracles Lance
Lance, a Miles for Miracles runner, with his twins Lily and Luke

When I tell people I’m running the Boston Marathon as part of the Boston Children’s Hospital Miles for Miracles team, the standard reaction is the same. “I could never run 26.2 miles.” My response never varies. “Yes, you can … with the right training, anyone can do it.” My kids can’t give up when they don’t feel like doing something, and neither can I. ~ Lance

My feet ache. I’m often exhausted. I’m hungry all the time. And committing to a long run every Saturday — rain, snow or shine — isn’t always fun. But my efforts pale in comparison to what drives so many others on this team. There’s Lance, a non-runner channelling his children’s determination. And Hazel, a Boston Children’s operations manager and one of the fiercest runners I’ve ever met. And Melissa, a quiet presence, shouldering constant, unimaginable grief.

There’s no way I can acknowledge every single person who has been — and will be — part of this journey, so I’m approaching it the same way I think about the marathon … in 5-mile increments.

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