Gene therapy trial offers hope for Harry

Boy with Wiskott-Aldrich syndrome holds father's hand.
Harry and his father at Dana/Farber-Boston Children’s

In their Brookline home-away-from-home, 2-year-old Duy Anh “Harry” Le plays with blocks and pop-up toys on the floor with his mother, Thao Nguyen. He is lively and happy, and his skin is clear. He looks almost nothing like the sickly baby covered in eczema who arrived in Boston from his native Vietnam in November of 2016 to participate in a gene therapy clinical trial for Wiskott-Aldrich syndrome.

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‘An easy decision’: Finding care for short bowel syndrome

care for short bowel syndrome

Allie DeRienzo loves to dance, sing and play with her big brother, switching from the pink-and-purple cartoon world of Shimmer and Shine to the action-packed fantasy of Star Wars with the blink of an eye. It’s a flexibility that has served her well: In just a few years, she’s endured more ups and downs than most 3-year-olds.

Although her pregnancy was normal, it became clear as soon as Allie was born that something wasn’t right. “She was incredibly distended and was transferred almost immediately to a high-level neonatal intensive care unit (NICU) in New York,” remembers her mother, Nanci.

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Inflammatory bowel disease: 6 tips for a new school year

IBD-Back-to-school
A new school year presents a lot of new opportunities like new teachers, new subjects and the possibility of new friends. But that newness also comes with a good degree of uncertainty, which can be frightening for a student with a chronic illness, such as Crohn’s disease or ulcerative colitis, collectively known as inflammatory bowel disease (IBD). That anxiety can be especially strong if the diagnosis is new, and the upcoming school year will be your child’s first with IBD.

“The first day of school after an IBD diagnosis can be hard, but with some planning it’s quite manageable,” says Dr. Michael Docktor, of the Boston Children’s Inflammatory Bowel Disease Center. “Most children with the condition are able to quickly return to their normal school routines. All it takes is a few extra steps to make the return as seamless as possible.”

Watch Dr. Michael Docktor’s caregiver video

To ensure school is a positive experience for your child with newly diagnosed IBD, Docktor suggests speaking with your child’s teachers, school administrator and nurse as soon as possible to discuss any concerns or questions you may have. Here are some tips to help prepare for a busy school year.

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Kenny’s story: Determined to play again

Kenny recovering after Boston Marathon
Photo credit: Keith Bedford, Boston Globe

Dear young athlete,

Don’t let anyone tell you that you’ll never be able to play sports again. Don’t let them take away what you love to do. If I had given up sports, I wouldn’t have my dream job today. Let me share my story.

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