Remi’s Fight With SMA Continues – Can You Help?

On a beautiful summer day, a baby girl named Remi made her debut in the world.

To all appearances, everything was normal—10 fingers, 10 toes, and bright eyes. Her parents were ecstatic. Four months later, however, they noticed her little legs weren’t moving the way a typical baby’s legs moved. They took her to the pediatrician who ordered an MRI.

They were then referred to a neurologist who gave them the devastating news that Remi has spinal muscular atrophy or SMA.

This is a particularly cruel disease because those with the most severe type of SMA can become paralyzed. Eventually, they often have difficulty swallowing and respiratory problems. Even with a milder form, SMA is progressive and leads to muscle wasting and weakness.

What’s even worse is there is no cure for SMA and treatments can do little to alleviate the symptoms.

There is reason to hope, however. Remi’s parents learned about a clinical trial for a drug called nusinersen, which has since been approved by the FDA and is marketed under the name SPINRAZA.

Preliminary findings support expectations that children with SMA on the drug are able to sit and stand. Some are even able to take a few steps!

Remi is now being treated with this medication and her parents are hoping she will have a bright future, blessed with good health.

If you would like to help Remi’s family cover her medical expenses, a GoFundMe page has been set up. Click here to donate.


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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