Child With SMA Dismissed as ‘Lazy Baby’ Now Thriving on Spinraza

According to the Daily MailLexi Pacini from Colorado has made incredible progress while using Spinraza.

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.

Find out how Spinraza works in treating SMA patients. 

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.

Find out more about the SMA treatment Spinraza.

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.

6 comments

  1. Wilma K says:

    Amazing. I had a son in 1962. But at that time there was nothing they could do for him. He lived to be just about eight years of age. His mind was just perfect t Wilma K

    • Tim Bossie says:

      We are truly sorry to hear of the loss of your son. It is true that research and technology have helped to bring about amazing new treatments and help for families. At the same time though it is difficult to hear about those that were not able to benefit.

  2. Sandra Cromer says:

    My grand daughter would be 11this June. Instead she got her Angel wings 2 days after Christmas at the age of 6 1/2 months. She had SMA type 1. Upon her passing Dr. Finkel asked to do an autopsy on her and said she would be one of the first to donate tissues used in research for a medicine or cure. I am so happy to see the progress made and so sad way too late for her.

  3. Pierre LeBlanc says:

    I’m wondering how someone could get on a trial? I am 51yrs old with SMA in New Brunswick Canada and love to try this Spinraza. I surely don’t have the money it cost for the injections. Any information would be appreciated for sure.

    • Tim Bossie says:

      Hi Pierre, we would recommend that you talk with your doctor about this trial and if it is available where you live.

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