A mother in Morrison, Illinois, fighting to save her son’s life, is helping to launch a campaign looking for help.
Earlier this year Local 4 brought you the story of Jenna Weets and her eight-year-old son, Jeg. He is battling a rare, fatal, neurodegenerative disease called Niemann-Pick Type C, or NPC. The disease is described as being similar to Alzheimer’s, Parkinson’s and ALS combined, causing rapid declines in the ability to move, think, speak and eat without medication. There is currently no known cure for NPC, and there are only two medications that help keep kids like Jeg alive.
Both of those medications are at risk of being taken away.
That’s why Jenna and other moms are launching a campaign called, “Save Our Medicine”, asking the Food and Drug Administration to do just that.
The campaign includes a video called “You Are My Sunshine”, where the moms sing the famous tune for their children. The moms also put a petition on change.org for the campaign, titled “FDA Save Our Medicine.” The petition has received over 43,000 signatures.
The Save Our Medicine campaign has also gained support from celebrities, including Jana Kramer, an actress from the TV show “One Tree Hill”, who shared the You Are My Sunshine video on social media when it was released.
Right now, the FDA is set to stop distribution of the two medicines in June of 2022, which has Jenna and all other moms who have children with NPC hoping the campaign works.
“My family knows that if Jeg were to lose this medicine, we’d see him rapidly decline and die within years,” she said. “They really are our sunshine, they’re the reason that we do everything that we do. They inspire us, they inspire everybody else, and we’re going to fight for them.”
Jenna and all other moms are asking for continued support and more signatures on their change.org petition to the FDA.