Stories about: Sitaram Emani

A diagnosis of Down syndrome motivates a family to go the extra mile

Mae, who has Down syndrome, sits on the bottom of a slide. As she leaves nursery school at the end of each day, Mae Tapley blows kisses to every person she passes on her way to the door. For her mother, Susie, watching teachers and staff step out into the hall to wave to her daughter is a welcome change. Three years ago, when Mae was born with Down syndrome, it seemed like no one knew what to say to her.

“When you have a typical child, people tell you how beautiful they are,” says Susie. “With Mae, no one told us she was beautiful or that she would have a full life until we came to Boston Children’s Hospital. They believed in her from the first day.”

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How mitochondrial transplantation saved Avery’s life

Avery Gagnon looks into the camera. She received mitochondrial transplantation to help her heart regain its energy.Today, 2 1/2 year-old Avery Gagnon looks perfectly healthy and happy.

But Avery is only alive today because of a revolutionary therapy called mitochondrial transplantation that used her own mitochondria — small structures in our cells that act as the “batteries” powering our organs — to boost her heart’s energy.

Mitochondrial transplantation comes to the rescue of hearts suffering from ischemia, a condition of reduced blood flow that damages mitochondria. As a result of its energy-sapping effects, ischemia is especially dangerous for the frailest cardiac patients: infants with congenital heart disease like Avery.

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Insider’s guide to care: Doctors and dogs

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Olivia and Dayton

Olivia Burgess knows every nook and cranny of Boston Children’s Hospital. The 13-year-old and her parents have traveled from their home in Bermuda to Boston since Olivia was three years old for ongoing treatments for systemic onset juvenile rheumatoid (idiopathic) arthritis and pediatric lupus.

“The unpredictable and severe nature of Olivia’s condition and the frequent travel required for medical treatment can be stressful at times,” says her mother Traci. Olivia sees providers in multiple departments: cardiology, nephrology, pulmonology, dermatology, neurology, gastroenterology and orthopedic surgery.

Drs. Fatma Dedeoglu and Marybeth Son, both in the Boston Children’s Rheumatology Program, are Olivia’s primary providers and serve as home base for her frequent visits. “We have cared for Olivia since she was a toddler. She’s like one of our own children,” says Dedeoglu.

The hospital’s four-legged, furry volunteers and their owners also play important roles in Olivia’s care and help the teen stay positive.

Olivia is an enthusiastic participant in Boston Children’s Pawprints Program — the hospital’s dog visitation service.

“Her face lights up when she talks about dogs. This program can really make a difference for kids who love animals,” says Son.

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