Stories about: Cerebral Palsy Program

Calvin’s gift: Second opinion provides answers and hope

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It’s not often that parents breathe a sigh of relief when their child is diagnosed with a chronic, potentially debilitating condition. But that sense of peace is just what Paula and Scott Hurd felt when they were told that their son, Calvin, had a rare movement disorder. “We were so happy to finally understand what was happening,” says Paula.

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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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Experience Journal: Growing up with cerebral palsy

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Cerebral palsy (CP) is the most common physical disability of childhood. The term CP is an umbrella term for a group of disorders that affect body movement and posture as a result of damage to a baby’s developing brain. There are many causes for CP, but all occur either during pregnancy, birth or shortly after birth. Common causes include differences in brain development, infection or stroke. Oxygen deprivation is accountable for only a small percentage of cases of CP; often, the cause is unknown. Although CP is a lifelong condition that can’t be reversed, children with the diagnosis can lead rich, fulfilling lives with the right medical and surgical management.

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The Cerebral Palsy Experience Journal, created by the Boston Children’s Hospital Department of Psychiatry and the Cerebral Palsy Program,  represents the collective wisdom of patients and families living with Cerebral Palsy.

Children, adolescents, young adults and parents were interviewed about their experiences with cerebral palsy from dealing with others’ questions to coping with physical and emotional challenges. Read their stories in their own words.

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Hunter’s story: Oh, the places he’ll go!

cerebral palsy_mobility dog_HunterHunter VanBrocklin is a kid on the go. The fearless fourth grader loves to hike on his family’s 20-acre property in Alfred, Maine, with his constant canine companion Wendy by his side. He trekked through national parks in the U.S. and Canada with his parents and sister in the summer of 2015. He’s even developed his own version of four-wheeling.

Hunter is exceedingly mobile for a child who shouldn’t be walking, according to the experts.

“When Hunter was a baby, he was slow to roll over and crawl and wasn’t walking,” recalls his mother Kelly VanBrocklin. His pediatrician referred Hunter to Dr. Gregory Melkonian, an orthopedist in the Boston Children’s Hospital Orthopedic Center and Cerebral Palsy Program, who diagnosed Hunter with cerebral palsy, just shy of his second birthday.

Melkonian performed botulinum toxin (Botox) injections and serial casting to reduce the spasticity in Hunter’s ankles and improve his walking and balance. Hunter also was fitted with lower leg braces.

As a toddler, Hunter started using a walker to get around. He jokes, “That walker didn’t stand a chance. Walkers are good for going at slow speeds, but they aren’t meant for kids on the go.” Hunter broke his second walker in less than a year.

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