Stories about: spinal muscular atrophy

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.

Read Full Story

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.

Read Full Story

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.

Read Full Story

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.

Read Full Story