Boy With Spinal Muscular Atrophy (SMA) Finds Hope with Spinraza®

All Camden Fuller’s parents want is for him to have the chance to be healthy, grow up, and live a fulfilling life.

That’s what every parent wants for their child. So, in and of itself, Ashley and Zack Fuller’s hopes aren’t unusual. What sets them apart is their son, Camden, has Type I spinal muscular atrophy, or SMA.

Type I SMA, which is diagnosed within the first six months of a baby’s life, is the most severe form of the disease.

It can cause developmental delays and makes it nearly impossible for the baby to hold their head up without assistance. Rolling and crawling are beyond their capabilities. Eventually, it leads to breathing and swallowing difficulties.

The unfortunate truth is most babies born with Type I SMA rarely live past their childhood years.

Camden, however, is defying the odds.

In 2016, the first FDA-approved treatment for SMA was released. It’s called SPINRAZA® (nusinersen) and it’s made by pharma company Biogen. Camden began treatment with the prescription-only medication and is showing great improvement.

To see a video of this brave little boy rolling (with coaching from his physical therapist) click here. He happily babbles as he works with the therapist, and he no longer has a feeding tube.

SPINRAZA is not a miracle drug. No drug is, but it’s making a tremendous difference in Camden’s development. It is a very expensive drug, and being in the rare community, we know the financial weight of rare disease treatment.

Ashley and Zack held a fundraiser in February, and an account has been set up to receive donations to help the young family defray the costs of Camden’s treatment.

If you would like to make a contribution, please contact:

Civista Bank
“Cure for Camden”
200 North Gamble St.
Shelby, OH 44875
(419) 347-5770

Has SMA affected someone you love? Share your story with Patient Worthy and help us raise awareness!

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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