Carter C. | 2025 All Star | Connecticut Children's Foundation

"Just a boy like anyone else"

New parents Ashley and Matt had no idea they each carried the gene for a rare muscular dystrophy when their twins, Carter and Calvin, were born. All they knew was that newborn Carter was not doing as well as his brother. He fed slower and showed low muscle tone. “I’m a naturopathic physician and my husband is a chiropractor and we were like, something’s not right,” Ashley said. After back-and-forth visits with their pediatrician, they were referred to Connecticut Children’s Emergency Department, where more tests were run.

Then Gyula Acsadi, MD, PhD, Division Head of Neurology, said he thought he knew what was going on, but needed one more blood test. That test revealed that Carter’s creatine-kinase levels were elevated to an alarming level that indicated muscle breakdown typically associated with muscular dystrophy (MD). There are more than 30 types of MD, so genetic testing was required to identify the exact type that Carter had.

“We were given a pamphlet with all the different options, and there’s so many scary ones and not so scary ones that the six-week waiting period was pretty tough,” said Ashley.

Zooming through life with MD

After six weeks, Dr. Acsadi called with the results. Carter had LAMA2-related muscular dystrophy (LAMA2-MD), which causes muscle weakness and progressive atrophy. From that day on, Ashley and Matt accepted that, “this is just our life now. It flipped a switch and then we were just worried about let’s make our house adaptable. Let’s buy a handicap van. What are the mobility devices he’ll need, so we can live as normal a life as possible,” Ashley said.

When Carter was a year old, a Connecticut Children’s care coordinator helped the family acquire a grant for a miniature power chair sized for a young child. “It was amazing. Carter could zoom around the house. He had total mobility in that thing,” said Ashley. Today, Carter gets around in a power chair that weighs 350 pounds. He continues to see multiple divisions at Connecticut Children’s, including neurology, endocrinology, pulmonary medicine, cardiology, gastroenterology and physical and occupational therapy. In the future, Carter will need surgery for orthopedic spinal rods.

Carter and Calvin Smiling for the Camera

A brotherly bond

In many ways, Carter is a typical 5-year-old boy. He loves all things cars and enjoys playing racing video games. For Hanukkah, his grandfather surprised him with tickets to a monster truck rally.

Carter has such a unique dystrophy, but he’s still just a boy like anyone else."
Ashley, a Very Grateful Parent

He and Calvin are like any brothers. They’re close, but they fight over the iPad. They play tag and hide and seek. And though they are in different kindergarten classes, Calvin is the go-to person when Carter’s power chair malfunctions at school.

Carter is in a regular classroom, where school staff adapt activities for him. He loves PE, art and music. “He’s super social,” Ashley said. “He remembers everybody’s name. He loves to talk and be around other people.”