Author: Ellen Greenlaw

New treatment for SMA offers hope for Arianna

Arianna, who has SMA, is improving after treatment.For the first few months of Arianna Condon’s life, everything was moving along fine. She was a happy baby, and seemed to be developing much like her older sister, Tessa.

“She was gaining weight, and seemed to be doing great,” says Arianna’s mom, Marina. “She did have problems with reflux, but it was nothing too unusual for a baby.”

But by the time Arianna was 3 months old, Marina started to have concerns. Arianna wasn’t lifting her head the way Tessa had at that age. Something didn’t seem right.

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Building a healthy heart through cardiac fitness

Joao, who has Ebstein's anomaly, poses in New York City. This spring, Joao DeToledo will be stepping onto the volleyball court to play for his high school team for the first time. It will be a proud moment for the high school senior from Somerville — playing a competitive sport is a goal he hadn’t dreamt possible just a few years ago. Though Joao has always loved sports, he was born with Ebstein’s anomaly, a congenital heart condition that, until recently, has forced him to spend a lot of time on the sidelines.

When Joao expressed frustration at not being able to participate in gym and sports as much as he’d like, his cardiologist, Dr. David Fulton, recommended the Cardiac Fitness Program at Boston Children’s Hospital. The program, one of the first of its kind, offers kids and adults with congenital heart disease a chance to exercise in a safe environment.

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The gift of being heard

When Keira Kelley started collapsing shortly after her first birthday, her parents were terrified. But what was almost as upsetting was the feeling that no one believed something was actually wrong with their daughter.

“The first time it happened, she tripped over a chair and was unconscious and grey,” says Kate, her mom. “My husband thought she was gone. He called 911, and when the EMTs arrived she started to come to. They thought maybe she had the wind knocked out of her.”

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Daughter’s neurosurgery inspires mom to give back

Kannon, who had hydrocephalus, is now a happy 5-year-old.Danielle Parkman isn’t a doctor or nurse. In fact, she’s not a clinician of any kind. And yet every day she makes the lives of patients in the Boston Children’s Hospital Division of Pulmonary and Respiratory Diseases a little bit easier.

As the Senior Administrative Associate for Pharmaceutical Benefits and Prior Authorization Specialist, Danielle is responsible for getting approvals for pharmacy benefits and prior authorizations for all pulmonology patients. It’s a daunting task, but she doesn’t take no for an answer.

“I love my job, and I love fighting for my patients,” says Danielle. “I know I’m making a difference. I can also empathize with many of the parents because I’ve been in their shoes.”

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