Stories about: spinal muscular atrophy program

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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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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Vivienne and Milka: Service dog brings a smile … and much more

viv_milkaWhen the Liedtke family met Milka, they were not looking for a pet. They weren’t searching for a puppy-sized bundle of trouble either. Nor had they considered a service dog for their daughter Vivienne, who was diagnosed with spinal muscular atrophy (SMA) prior to her second birthday.

But none of that mattered.

SMA, a genetic muscle-wasting disease, had left Vivienne confined to an electric wheelchair and unable to perform many daily activities independently.

One activity Vivienne loved was hippotherapy (therapeutic horseback riding); the owners of the farm where she went horseback riding also bred puggles, a beagle and pug mix. One week, Vivienne’s therapist placed a tiny, newborn puggle puppy in Vivienne’s hands.

Her face lit up. And she was crushed when her mother Helena told her it was time to return the puppy to its mother.

“I love dogs, but I didn’t want one just then. My hands were full with Vivienne and her younger sister Lara,” recalls Helena.

Helena phoned her husband, suggesting he come to the farm to watch Vivienne ride and secretly hoping he would say “no” to the puppy.

She handed him the puppy, and after weighing the benefits for both Vivienne and Lara, the whole family was hooked.

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