Stories about: spinal muscular atrophy

A look back: Our most popular stories of 2018

Top stories of 2018
PHOTO DESIGN: SEBASTIAN STANKIEWICZ/BOSTON CHILDREN’S HOSPITAL

As 2018 comes to a close, we’re taking a look back at some of our most popular stories from the past year, from ground-breaking surgery and clinical trials to stories of unbelievable courage and hope.

Thank you to the many families and patients who kindly shared their stories with us in 2018. As always, you continue to inspire us.


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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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Tyler’s story: Moving toward a new future with Spinraza

Tyler, who has SMA, rides a ski lift on a recent ski trip. Tyler Hansen was always a happy child, but also a little clumsy. At first, his parents didn’t think too much about it.

“Tyler’s the youngest of four,” explains his dad, Doug. “The oldest two are tall and sprouted early, so they were both kind of awkward and clumsy. We assumed it was the same with Tyler, that he was just going through a growth spurt.”

But after a while, they started to become concerned. Something seemed different about Tyler’s clumsiness, and Doug noticed he had an awkward way of running. They took him to their pediatrician and voiced their concerns.

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After Spinraza: My new life with SMA

Kate, who has SMA, out walking on a trail.

When I was 4 years old, I was diagnosed with spinal muscular atrophy (SMA) at Boston Children’s Hospital. My mom will probably tell you that it was the worst day of her life — SMA is a relatively uncommon disease that comes with a lifetime diagnosis, so it caused a level of uncertainty as to what my future would hold.

SMA runs on a spectrum, and I happen to have a less severe case, called type III SMA. I can walk short distances, but otherwise use a wheelchair, and have fairly average strength throughout my body, with the exception of weakness in my legs.

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