Carter Doyle, a 17-month-old boy from New Gloucester, is among a few hundred people in the world to be diagnosed with diffuse cutaneous mastocytosis, a rare form of an extremely uncommon mast cell disorder.

Last year, almost $20,000 raised by the Crystal Lake Ice Fishing Derby’s polar plunge and a Super Bowl party held at Cole Farms in Gray were given to the Doyle family during their crisis. Around the same time, one of Carter Doyle’s doctors said he wouldn’t live more than three months. A year later, he has “defied all odds,” father Scott Doyle said.

On Dec. 12, 2014, Carter Doyle was rushed to Maine Medical Center with a rash on his chest and under his arms. Scott Doyle, a captain with the New Gloucester Fire-Rescue Department, said it looked as though his son had been “dipped in hot grease.” Later that evening, the boy went into cardiac arrest and suffered a brain injury.

Carter Doyle was diagnosed with an autoimmune disorder caused by excessive mast cells in the skin. Mast cells release histamines that help fight allergic reaction. In cases of mastocytosis, the excess of mast cells causes the body to react to acute stressors with anaphylactic shock, causing itchy, abrasive blisters and hives to erupt on the skin.

Carter Doyle spent the month after his diagnosis in the intensive care unit at Massachusetts General Hospital in Boston, which happens to be the country’s leading hospital for mastocytosis. In mid-January, 2015, he was transferred to Barbara Bush Children’s Hospital in Portland. He returned home in February, but was admitted to Maine Medical Center several times during the following months. Doyle said his son hasn’t been admitted to Maine Med since May.

Even being too warm or teething can be a stressor for Carter Doyle. He is treated for extreme anaphylactic shock and medicated with antihistamines or steroids to fight off the severe reactions. He receives daily medications through a port installed in his stomach.

Doyle said because the disease is so rare, “there’s very little medical advice around this. When we go to our doctor’s appointments, we’re educating them on what’s going on with Carter.” Due to its rarity, Carter Doyle is part of a case study on mastocytosis at Mass General.

Carter Doyle has also been diagnosed with a genetic disorder, tuberous sclerosis, which causes benign tumors to grow on his brain, heart and kidneys. Doyle said the family’s pediatrician is “completely baffled by what the boy has been given. It blows his mind.”

Doyle said his son is socially on target, although physically he is slightly behind his age group. He cannot crawl, but Doyle said, “we’re working on it. With everything else he faces, we can’t let him stress.”

Doyle works as an independent insurance agent and has been an active volunteer firefighter for New Gloucester for many years. His wife, Amanda Doyle, works as a third-grade teacher at the Burchard A. Dunn School in New Gloucester. Their older son, Ethan Doyle, is 3 years old. Doyle said the family has nursing care in their home nearly around the clock on the weekdays to assist with Carter Doyle’s needs.

In the early months after his son returned home, Doyle said they received incredible support from friends, neighbors and fellow firefighters.

“It was phenomenal. We wouldn’t be able to track everyone who stopped by with a meal, or stopped by to play with our 3-year-old for a couple hours,” he said.

Brian Chipman is a nurse at Maine Med and a friend of the Doyles. He and Scott Doyle have worked together as volunteer firefighters as well. Chipman attended to Carter when he was first admitted to Maine Med in December 2014.

“Carter is an amazing little dude,” Chimpan said. “He’s overcome some amazing stuff. He has a real will not to just survive but to thrive as well. I don’t think people realize what it has taken to get him where he is now.”

Chipman and his wife, Shelly Chipman, have helped the Doyles during the past year, sometimes coming to “sit with Carter for a while so (his parents) can get a bit of sleep,” he said.

But Chipman said he thinks most people in town “would do anything for Scott and Amanda. They’ve given us so much over the past years.” Among those community efforts was Scott Doyle’s leading the effort to raise money for “Lungs for George,” a successful fundrasing effort for another New Gloucester firefighter, George Carmen, who received a double lung transplant several years ago.

Although Carter Doyle’s episodes are brought on by stress, Doyle said his son loves to be thrilled and excited.

“What means the most,” Doyle said, is to come home and see his sons laughing together and playfully pestering each other.

“Carter’s laughter is truly contagious. He gets a wicked belly laugh going sometimes, and it’s truly priceless. When the doctors asked last winter ‘what is one of your goals for him?’ I said I want him to be able to feel happiness. Well, we can check that off. He knows how to feel happiness alright…That’s the stuff we didn’t know if he’d ever be able to experience.

“Now it’s like, alright, let’s get him to crawl. If we can get him to crawl, we can get him to walk. If we can get him to walk, we can get him to run.” Doyle laughed, “If he can run, then we’re screwed.”

Carter Doyle in his New Gloucester home. Doyle is among a few hundred people in the world to be diagnosed with a rare mast cell disorder.Scott and Amanda Doyle pose with their sons, Ethan Doyle (right) and Carter Doyle (left), in this December photo. The Doyles chose orange as the color to show support for their son.


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