Stories about: Our Patients’ Stories

Family Advocacy Day: Three families take their stories to Congress

Nova, who has Pfieffer syndrome, walks through a park.
Nova is taking her story to Congress

Later this June, three patients from Boston Children’s Hospital will be joining other kids and young adults from across the country at the 2018 Speak Now for Kids Family Advocacy Day in Washington, D.C. During their visit, they will share their stories with Congress and ask them to protect all children’s access to health care.

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Jordan’s Story: The scoliosis rollercoaster

Jordan Martelli scoliosis patient story brace

I like to call life a rollercoaster; sometimes you go up, and sometimes you go down. When you’re up, you are going through parts in your life when you are happy, and when you’re down, you’re going through parts in your life that make you sad, and nothing can make you feel happy. At one point in my life, I was always riding down.

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Football and family: Overcoming brachial plexus birth palsy

Brachial plexus patient plays football
(Photo credit: Ray Labbe)

Chase is only a few months away from fulfilling a lifelong dream; playing college football. It’s a dream thousands of other kids across the country will be living out this fall — but they aren’t like Chase.

“The first time I saw Chase was in 2000,” says Dr. Peter Waters, Orthopedic Surgeon-in-Chief and director of the Brachial Plexus Program at Boston Children’s. “He was six months old when his parents brought him in, and had a severe brachial plexus injury to his right side.” To correct this nerve injury that occurs during birth, Chase would undergo nerve surgery on his arm in 2001, and another two surgeries on his shoulder in 2003. He would continue to need life-long physical therapy as he grew and will always have limited use of his right arm.

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SMA and Spinraza: A tale of two siblings

Kernan and Braeden Farrrell, who have spinal muscular atrophy, wave for the camera. When Kernan Farrell started falling and losing developmental milestones shortly before her second birthday, her parents, Kristen and Jim, knew the cause right away. Like her older brother, Braeden, she was born with the gene for spinal muscular atrophy (SMA), a rare genetic condition that causes weakening muscles throughout the body. They had been watching and waiting, wondering if and when Kernan might start showing signs of the condition.

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