Stories about: tracheostomy

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

Photos by Katherine C. Cohen 

SharieffDadBench

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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Tyler’s story: 20 surgeries with a smile

20150624_Tyler20thSurgery-1Tyler Bois is a boy with goals. His career aspirations run the gamut. Some days, he dreams of playing football with his favorite team—the Dallas Cowboys. Others, he wants to open a pizza shop, perhaps called “Slice of Ty” or “Ty’s Pizza Palace.”

For now, the nine-year-old stays busy with every day kid stuff—playing with his golden retriever puppy, planning for Cub Scout camp, dancing in the school talent show, skiing and wakeboarding. Somehow between all of these activities, Tyler has squeezed in 20 surgeries.

Born with spina bifida and a Chiari malformation (a congenital defect in which the back parts of the brain slip into his spinal cord), he approaches each surgery with a trademark smile and can-do attitude. Before his last operation Tyler wowed Boston Children’s Hospital staff with an impromptu dance from his hospital bed.

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One family's story: Raising multiple children with complex medical issues

Gretchen Kirby is a mother to four children, three of whom were adopted from foster care with complex medical issues. Here, Gretchen shares why adopting chronically ill children is so important to her and discusses how the centralized care provided by Children’s Hospital Boston helps her keep her “fearsome threesome” on the move.

Keva, Adrien and Tavish enjoy the snow

Growing up in a large family, I always knew I wanted to have lots of children one day. My brothers and sisters and I shared so much as kids that even as a little girl I knew I would want the same for my own children. But life doesn’t always go as planned. Over the years I’ve earned degrees, worked, lived, loved and had a child, but never found the right person to help start the big family I always envisioned for myself. Eventually I decided to follow my heart and build my family through foster adoption.

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