December 17, 2018
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‘He was so strong’: Community mourns loss of Maine boy battling rare disorder

Ioanna Raptis | The York Weekly
Ioanna Raptis | The York Weekly
Dakota Carter, then 9, looks at his mother, Shannon, as she helps him into his chair in this file photo from The York Weekly. Dakota died on Feb. 15 from a rare genetic disorder, epileptic seizures and heart problems.

YORK, Maine — Green was young Dakota Carter’s favorite color, and in his memory throngs of family, friends and community members donned an emerald scarf, a shirt, maybe a green necklace or two as they came to Foster’s Clambake Wednesday afternoon to say goodbye to their young friend and support his parents.

Dakota, 10, died Feb. 15, surrounded by his parents Shannon and Charlie, brother Jordan and family members. A celebration of his life was held at Foster’s, and that’s exactly what the gathering amounted to as people recalled a “strong” and “brave” boy who suffered from a rare genetic disorder, epileptic seizures and heart problems.

“Even though he was younger, I looked up to him,” said his cousin Alahna Turmelle, 14. “He was so strong. He went through a lot, in every way. And he got through it all and always kept smiling.”

Turmelle’s mother Samantha, Charlie Carter’s sister, agreed. “He has been a very special boy to us. Dakota brought everyone together in our family. You had no choice. You had to be strong.”

Among those who came to the gathering were the staff and board members of Habitat for Humanity York County. The Carter family last fall was selected for a Habitat home in Wells. Both York High graduates, Charlie and Shannon have raised Dakota and Jordan in a second-story apartment above a storage facility on Route 1.

Habitat “absolutely, no question” will continue its commitment to the family, said board member Elizabeth Doty, chairwoman of the family support committee. “We’ll see what their plans are in the time to come, and we’ll follow their lead,” she said.

Also at the gathering were a number of families whose children knew Dakota through the Morrison Center in Wells, which provides education and training for children and adults with disabilities.

“Our sons are really good friends. They met at the Morrison Center and pretty much grew up together,” said Breydin Bryant of Kennebunkport, as she absentmindedly ran her fingers through son Mason’s hair. She said Mason doesn’t “quite yet” know Dakota has passed, “but he will.”

Over the years, she said, the mothers whose children go to the center have become “our own family, together” with Shannon Carter as a pivotal part. “Shannon is one of the strongest, most loving moms I’ve ever met. That family is the toughest family ever. I admire them so much.”

So too does Reenie Johnson, who now works at Town Hall but when Shannon was growing up drove the school bus that picked her up. “I’ve seen her since she had Dakota, and knew what she was up against and how she handled it so gracefully and lovingly. I always admired her for that. And she has no regrets. Nothing.”

Shannon’s cousin Meghan Lowther, the mother of three, said “so many days I can’t live up to the mom I want to be. There’s things I feel incapable of doing, or days when I just feel tired taking care of my healthy children. I look at Shannon and I can’t imagine.” Still, said Lowther, the family has a strong support system that will help them in the days and weeks to come.

Dr. Steve Brennan, Dakota’s pediatrician, said he has a vision of his young patient, and it makes him smile.

“I see Dakota’s spirit just flying around, enjoying himself, having a blast, all those restrictions gone,” said Brennan. “And he’s smiling and laughing.”

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