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. …