When Willow Christie was only 14 months old, her parents learned their little girl would never crawl or take her first steps.
Defying a prognosis of lifetime immobility, Willow – who’s mostly confined to a tiny wheelchair – crawled across the floor, shocking her doctors and parents, who now say, “I honestly feel like she will one day walk on her own.”
Keep reading to learn more about this brave toddler who’s fighting a rare muscular disease!
Lorna Christie and her husband Lee were devastated when their 14-month-old baby girl, Willow Christie, was diagnosed with spinal muscular atrophy (SMA), a rare disorder causing muscle weakness and shrinkage.
The incurable neuromuscular disease, which according to John Hopkins Medicine “is associated with worse outcomes” in infancy and early childhood, can be disabling or even cause death.
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It’s also genetic and claimed the life of Lorna’s infant nephew, Sol-John, who died 12 years ago of SMA.
For Willow, it “affects all her voluntary muscles,” and her mobility is mostly dependent on a wheelchair.
“I can’t put into words how hard it was to hear for me and Lee…It’s been a tough year and [I’ve] cried more tears than I even thought possible…The pain can be unbearable at times,” writes Lorna, 35, in a Facebook post one year after Willow’s diagnosis. “I still grieve every day for the life Willow should have had and deserved to have. She is the most wonderful little girl with big hopes and dreams that I know in her own way she will fulfil.”
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Newborn screening
The post, which includes adorable photos of the happy and tenacious little blonde girl continues, “She is so much more than a little girl with an illness in wheelchair, that’s only a tiny part of what makes her amazing.”
Adding to their immense suffering, Lorna and Lee, 41, learned that routine newborn screening could have detected the common mutation present in SMA, allowing early treatment that stops it from progressing.
“That’s hard for us to accept,” Lorna tells the Sun. “To know a simple blood test could have changed the course of her life is upsetting.”
Proving doctors wrong
Despite her prognosis, Willow had places to be, and the tiny tot completely shocked her parents on April 28, 2024, when she started crawling.
In a clip shared on TikTok, followers can see the little girl using her hands and legs to slowly wriggle across a rug. In the background, a tiny wheelchair with pink bright spokes sits.
“The doctors said they have never seen anyone with SMA do this, so it just gives us so much hope for the future,” Lorna says of her daughter, who’s now a big sister. “When she was first diagnosed, I thought that she would always be in a wheelchair, but she is proving everyone wrong every day.”
The proud mom adds, “I honestly feel like she will one day walk on her own.”
While Willow’s crawling has given her parents the hope they were desperately needing, the mom and dad are advocating SMA screening for newborns to help other parents.
“We can’t understand why it isn’t routinely tested for,” Lorna said about a simple blood test that can change the course of a child’s life.
