Lexi’s parents felt something was amiss with their little girl when she failed to meet the same development milestones her older sister had. At 11 months old, Lexi still hadn’t learned to crawl so they took her to see their doctor. The doctor referred Lexi to a physiotherapist who initially said Lexi was just a “lazy baby.” At two years old, Lexi still couldn’t walk, stand, sit on her own or crawl so they demanded more tests. Six months later, they took her to the Children’s Colorado hospital where specialists finally discovered what was wrong and diagnosed Lexi with spinal muscular atrophy (SMA) type 2.
Although there was no cure fo the disease, Lexi was eligible for a clinical trial for a new drug, Spinraza. It was while she was on the trial that her family saw a marked improvement in her condition. From not being able to walk and only being able to stand on her own for a few seconds, Lexi was able to walk 20 steps on her own after six months.
After 18 months on the drug, four-year-old Lexi can now walk on her own using either a stick or walker and do some limited climbing. Lexi has even enrolled in the same dance class as her older sister where she joins in using her walker.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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