Stories about: Complex Care Services

For the love of Sharieff: A father dedicates his life to his son’s complex medical care

Photos by Katherine C. Cohen 

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On an unseasonably warm day in February, the sun shines brightly at Clasky Common Park, a New Bedford town gem with views of the river. Twenty-one-year old Sharieff Hester sports a pair of cherry-red shades and a big smile. He walks confidently around the park, his father and sole caretaker David Hester dutifully following behind, checking in often. “Are you cold son?” he asks. Sharieff answers through his tracheostomy, “I’m fine, Dad.”

David stops to adjust his son’s scarf and offer him a sip of water. “We have a routine every morning. The first thing I do is hug Sharieff and tell him how much I love him. Then I make sure his trach is clean and dry, and we say a prayer together.”
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Sharieff has been cared for at Boston Children’s Hospital since his birth in 1994. His main diagnoses are Arthrogryposis, a rare congenital condition characterized by stiff joints and abnormally developed muscles; Klippel-Feil syndrome, a rare birth defect that causes some of the neck vertebrae to fuse together; restrictive lung disease; and pulmonary hypertension.

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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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Remembering my Boston Children’s childhood

When a baby is born with, or develops, a serious medical condition it doesn’t just affect the child—his or her whole family is affected. In the following blog, Jenn Streeter describes her experience “growing up” at Boston Children’s Hospital, as the healthy sister of a young boy being treated for multiple conditions.

By Jenn Streeter

The Streeters when Josh was an infant

There are certain childhood memories that stick with a person throughout life—a trip to Disney World, waking up Christmas morning and finding a new bike under the tree or the butterflies you get in your stomach on the first day of school. These memories are part of my childhood too, but I also have memories of growing up that most children could never relate to. As a child, I knew all too well knew the smell of an ICU unit, encountered talking elevator muttering strange words like “Fegan 10” and can clearly recall opening birthday presents bought in a hospital gift shop. And though it may sound odd, those are among my most cherished childhood memories.

My brother Joshua was born on October 4, 1994, to my wonderful, excited parents Edward and Sherri Streeter. While it was a joyous occasion, his birth also marked the start of a long medical journey. He arrived a few weeks premature with omphalocele (intestines grown outside the body), spinal meningitis and a disease I could barely pronounce—Beckwith Wiedemann Syndrome—more commonly known around my house as BWS. BWS often causes an overgrowth of organs and limbs and carries an increased risk of tumors and diseases.

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