Stories about: spinal muscular atrophy

Life with Vivienne: Clinical trial brings new hope for girl with spinal muscular atrophy

spinal muscular atrophy

Ed note: A year since this story was published, Vivienne remains stable. Her test drug, to be marketed as SPINRAZA (TM), met its clinical trial endpoints and is now under review by the Food and Drug Administration. It could be available in early 2017 for SMA Type 1 and possibly for other forms of SMA.

When Helena Liedtke was pregnant with her first child, she and her husband Helge could agree on one name only—Vivienne, which means to live.

They happily named their newborn daughter Vivienne and rejoiced in her good health.

But as Vivienne grew from infant to toddler, she was slow to reach motor milestones like crawling, cruising and walking.

“We started feeling suspicious around the time Vivienne turned 1 and wondered if she was losing strength,” recalls Helena.

Helena mentioned her concerns to Vivienne’s pediatrician at her 15-month checkup, but the doctor assured her Vivienne would be walking by the time she turned 18 months.

During the next few weeks, Helena and Helge observed their daughter and watched family videos they had taken in the past few months. “We could see Vivienne had lost strength and skills,” says Helena.

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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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