Stories about: Family Advisory Council

Carson Domey for president!

Carson Domey OFG Crohns

Most 11-year-old boys don’t own multiple dress suits, nor have they testified at a State Capitol. But Carson Domey is far from typical. As his Twitter handle suggests (@POTUSIT), he’s in training to be President.

This year has been a particularly productive one for Carson, as he takes cues for his 2044 presidential campaign. Five years ago, though, Carson was thinking more about getting a diagnosis than practicing politics.

Starting around age 6, Carson’s cheeks and gums would mysteriously become puffy and red. “It would come and go, and was something that only a mom would pick up on,” remembers Carson’s mother, Michelle. She took him to a dentist and an otolaryngologist, but the symptoms were always gone by appointment time, so neither doctor was concerned.

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Two perfect reasons to pay it forward

GetMediaPreview-2In 2008, Katie and Paul Litterer were living in New York City and expecting identical twins. When Katie was 26 weeks pregnant, they bought a house near Boston to be closer to family. The following week, Katie went into early labor, resulting in an emergency C-section and the premature birth of their daughters. Their new house would remain empty for months.

Sophie arrived first at a tiny 1 pound, 15 ounces and let out a cry. Maddie followed her sister at an even tinier 1 pound, 10 ounces. “I didn’t hear anything,” Katie remembers. “They just ran out of the room with her.”

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Chronic and complex: A family embraces their messy, beautiful life

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Lisa Burgess with (clockwise from the top) her husband Mark and sons Ben, Jamie and Dakota. “We always do selfies,” Lisa says. “I make them.”

Dakota Burgess readies to take his place on stage at Ryles Jazz Club alongside his band mates. He paces, grips his saxophone, flips his shaggy blonde hair and paces some more. Twenty-year old Dakota is autistic, as are the other members of the band from Boston Higashi School, a day and residential program for children with Autism Spectrum Disorder where Dakota has been a student for 15 years.

Dakota’s parents, his brother Jamie and a handful of friends are all in the audience, cameras and smiles ready. The show is almost starting. His mom, Lisa Burgess, leans over to a friend. “Just wait, they’re really quite good.”

The music starts. The band is good. Great, even. Dakota is nervous but focused and happy. He stays in tune and handles the spotlight like a pro during solos. At the end of the set, he bows and heads off stage.

Watching him high-five with friends, you’d never guess that Dakota was a defiant toddler. Or that he was a fearful 5-year-old. Or that his parents felt they were losing him to frustration and rage before finding Higashi. Or that he has received care at Boston Children’s Hospital for most of his life.

Dakota still struggles with anxiety but has thrived both academically and socially at Higashi and is learning life skills that will help him become more independent. The school’s jazz program and collaboration with Milton Academy has been a huge bonus.

“He keyed into music very early on,” Lisa says. “It’s really what saved him.”

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Dakota playing saxophone with the Boston Higashi School jazz band on April 30, 2015.

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