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. …
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.
“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. …
When Matt Freitas walked into TA Fitness, a warrior gym in Weymouth, Massachusetts, with his mother and a doctor’s note, co-owner Dave Cavanagh wasn’t sure what to expect. Then he thought, “If he’s coming into the gym with one leg, he must know what he can and can’t do.”
It’s seems as if the 15-year-old ninja warrior competitor and lacrosse goalie can do just about anything. He’s a straight-A student, Boy Scout, wrestler and local celebrity.
“Everyone knows Matt,” says Jenny Lawler, co-owner of TA Fitness. “I’ve seen younger kids whisper to their parents, ‘Is that Matt Freitas?’”
Last year, Matt, who loves the television series “American Ninja Warrior,” persuaded a friend to accompany him to the gym. The friend never returned. Matt works out there as often as he can fit into his jam-packed schedule. He’s joined the staff and often helps out with kids’ parties on weekends.
It is hard to miss Matt’s lanky 6’2” frame, easy grin and quirky sense of humor. Most of all, there’s the quiet determination that comes from facing an obstacle far tougher than any he’ll encounter on a warrior course.
One month before his 12th birthday, Matt was involved in a head-on car crash in Maine. His right foot was trapped under the front passenger seat and nearly severed. He was rushed to Maine Medical Center and underwent a below-the-knee amputation.
Matt’s parents Melissa and Scott lobbied to have their son transferred to Boston Children’s Hospital. “We were very happy with the care Matt received at Maine Medical, but we wanted Matt at Boston Children’s not only because it was closer to home, but also because it’s Boston Children’s. When he was transferred one week after the accident, it was a gift.”
Seventy visitors flooded Matt’s room the weekend he was transferred. While Matt welcomed the company, he set his sights on other priorities.
He wanted to get back to the lacrosse field. …
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. …