Boston Children's Hospital Every Child Fund

by Boston Children's Hospital
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Boston Children's Hospital Every Child Fund
Boston Children's Hospital Every Child Fund
Boston Children's Hospital Every Child Fund
Boston Children's Hospital Every Child Fund
Boston Children's Hospital Every Child Fund

Project Report | Nov 6, 2023
Boston Children's Hospital Report November 2023

By Michelle Martens | Project Leader

Do you like Adrian’s drawing? That’s him as an astronaut flying past the sun. He dreams BIG! He would also like to be a marine biologist when he grows up. Your contributions make bright, healthy tomorrows possible for kids like him at Boston Children’s Hospital.

After his first birthday, Adrian still wasn’t walking, he’d tip over when he sat and he stopped crawling. Despite local doctors’ reassurances, his mom Cassie knew something was wrong and was determined to find answers.

Cassie brought Adrian to Boston Children’s, where they discovered he had spinal muscular atrophy type 2 (SMA type 2), a rare genetic disorder that affects the nerve cells that control voluntary muscles. It can impact the movement of a child’s legs, arms, hands, head and neck, and can affect breathing and swallowing.

The diagnosis was alarming, but the family had reason to hope. Boston Children’s Spinal Muscular Atrophy Program offered comprehensive care from a team of experts across different specialties like neurology, genetics, orthopedics, physical therapy and respiratory/pulmonary—everything a kid like Adrian needed. There were also some recent advances in treatment for SMA.

Boston Children’s researchers had just conducted a clinical trial, which showed that a new drug called Spinraza could help the muscles and nerves of SMA patients work more normally. It was the first FDA-approved SMA treatment—and Adrian’s doctor prescribed it immediately.

The treatment was life-changing.

“Before Spinraza, if you sat Adrian on the floor, he’d fall over. He couldn’t roll over or crawl, so he would just be lying there. With every dose, he was doing more,” said Adrian’s dad José.

After about a year and a half on Spinraza, Adrian’s progress plateaued, but his care team found a way to keep him moving ahead.

Now Adrian visits the hospital every four months for injections to slow the disease and he’s joined a groundbreaking clinical trial to remove the bad proteins that prevent his muscles from growing. He visits for infusions of that medicine every 20 or so days.

Every week, Adrian works with physical and occupational therapists and he’s getting stronger and stronger. Adrian works hard to be healthy and active. He takes an adaptive swim class, plays sled hockey and baseball. He is a wonderful big brother and keeps his whole family laughing.

Watch this video to see how you can help kids like Adrian thrive. When scientists, caregivers and supporters like you work together, you give children the very best gift—adulthood.

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Organization Information

Boston Children's Hospital

Location: Boston, MA - USA
Facebook: Facebook Page
Twitter: @BostonChildrens
Project Leader:
Korinne Durando
Boston , MA United States

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