Thanks to Carter and his family, people are talking about spastic paraplegia

Nine-year-old Carter may be the most devoted — and popular — sports fan in his Connecticut town. “He loves all sports,” says his mother, Natalie.

Whenever one of Carter’s buddies has a game, Natalie’s phone lights up with texts asking if he can attend. As his friends play, Carter cheers and gives high fives from his wheelchair. Whether the game is flag football, soccer, or basketball, he often joins the huddles.

Carter’s busy sporting life is a testament to his family, his community, and the care he receives at Boston Children’s Hospital.

Searching for the best possible care

Starting when he was a baby, Carter showed signs of developmental delay and vomited frequently. After he was diagnosed with cerebral palsy (CP) at a local hospital, his care became a maze of unexplained symptoms, tests, and doctor visits. “I was trying to make all the appointments myself,” says Natalie. “It would be one appointment on this day, then three appointments another day. It was just absolute chaos.”

An acquaintance on the West Coast offered to ask her child’s orthopedic surgeon for a recommendation near Connecticut. The response came back almost immediately: Dr. Benjamin Shore of the Cerebral Palsy and Spasticity Center at Boston Children’s Hospital. The three-hour drive to Boston had once seemed insurmountable. Now it seemed worth a try.

“I wanted to do whatever I could for my child,” says Natalie. “I thought, if the best care for Carter is only three hours away, how lucky are we?”

Finding support and a surprise

Natalie and Carter’s father, Pete, soon found Boston Children’s to be a “well-oiled machine.” All of Carter’s appointments — with specialists in CP, gastroenterology, neurology, and complex care, among others — were scheduled on the same day, and his doctors worked together to coordinate the many aspects of his care.

Dr. Shore and Dr. David Fogelman, for instance, managed the spasticity that caused the muscles in Carter’s legs to contract painfully, while Dr. Beate Beinvogl focused on the ongoing digestive issues that impeded Carter’s nutrition and growth. “It was a very efficient, organized way of treating a child and their family with a lot going on,” says Natalie.

Carter also underwent genetic testing, with results that shed a surprising new light on his condition. Instead of CP, Carter had spastic paraplegia 3A (SPG-3A).

SPG-3A is a rare condition with symptoms that, like CP, include spasticity and muscle weakness. Because treatment for both conditions focuses on managing these symptoms, Carter’s care team remained largely the same. But now his parents knew his condition was the result of a genetic mutation and not from a lack of oxygen to his developing brain.

Helping Carter grow

By the time Carter was 6, the spasticity in his legs had worsened and his hips began to subluxate (dislocate) more often, causing pain and dysfunction. He needed hip surgery, but to be considered for such a significant operation, he first needed to gain weight.

For many years, Carter had received tube feedings. However, he didn’t tolerate these well and struggled with severe vomiting episodes. What happened next is an example of how the specialists on Carter’s multidisciplinary team worked together to do what was right for Carter.

First, to help him grow, Dr. Beinvogl initiated total parenteral nutrition (TPN), a way of delivering nutrition directly into the bloodstream. Carter spent three weeks at Boston Children’s and Natalie received intensive training in how to feed him intravenously at home while avoiding infection.

After years of worrying about his weight, Natalie and Pete sighed in relief as they watched Carter finally growing bigger and stronger. By the following summer, his weight had almost doubled. “He was on the growth chart for the first time in his life,” says Natalie.

By the summer of 2024, Carter was strong enough to undergo hip surgery. The procedure relieved the spasticity in his legs so that they no longer scissored inward and his knees no longer pressed against his face when he slept at night. Although his legs still tend to flex involuntarily, daily stretching exercises help them relax.

Creating community

Natalie understands that many people feel uncomfortable talking about disabilities, and she wants to change that narrative.

“I’m open to talk about anything and everything related to Carter,” she says. “It would be so isolating and lonely if no one asked questions.”

Early on, she started going to Carter’s school to answer his classmates’ questions about his condition. Today, many of these same kids are part of Carter’s friend network. They compete for the right to play with Carter at school and light up when he comes to their games. When the family brought home a new accessible minivan, a band of 9-year-olds couldn’t have been more excited. “They think it’s the coolest thing they’ve ever seen,” laughs Natalie.

Finding happiness

In the early days of Carter’s life, other parents would tell Natalie, “It does get easier. You will find happiness again.” She had a hard time believing it at the time, but now she’s living that truth. And she’s in a position to help other parents find their happiness as well.

“Celebrate every win, even when it’s small,” she advises. “Take it one day at a time when you need to, so you can find happiness for yourself and for your child.”

Learn more about the Cerebral Palsy and Spasticity Center.