QC mom of boy with rare fatal disease fights for his medication

Local News

Local 4 introduced you to 7-year-old Jeg Weets back in February. He lives with a rare fatal genetic disease, Niemann-Pick Type C, or NPC, and now the pharmaceutical company that makes his medication is discontinuing the drug.

This month, Jeg’s mom, Jenna Weets, and other mothers of kids with NPC plan on launching a campaign called Save Our Medicine, and they already have plenty of support.

The moms created a Save Our Medicine petition on change.org that has compiled over 41,000 signatures.
They plan on sending the petition to the FDA to get the medicine back or come up with some equally fair alternative. Weets says she and the other moms know the medicine works, and will fight as hard as they can to get it back.

This effort is coming at a perfect time as well, as October is NPC Awareness Month. Local 4 will have more on this story once the Save Our Medicine campaign is officially launched.

Copyright 2021 Nexstar Media Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

Trending Stories