RivCo Family Fights For Cure To Save Son With Rare Genetic Mutation

Murrieta Family’s Mission: Hope for Rare Genetic Disorder

Murrieta, CA — When their son Paxton turned 7, Paul and Kristin Purdy received shattering news: Paxton had an ultra-rare genetic disorder, and there was no treatment or cure. Diagnosed with autism earlier, Paxton’s condition had recently taken a turn for the worse with severe seizures and other mobility challenges.

"Your whole world comes crashing down," Paul recalled. "We were in shock, going through all the stages of grief except acceptance."

Yet, the Purdys refused to give up. Told there was no cure, they started researching gene therapies and discovered work at the University of Massachusetts Gene Therapy Center. Scientists agreed to study Paxton’s mutation, with a goal of designing the first gene therapy vector to halt or reverse his condition.

However, developing the treatment comes with a daunting $1.5 million price tag. The Purdys formed a nonprofit, Cure CLCN6, to raise funds and drive further research. To date, their GoFundMe campaign has raised over $60,000.

The family is hosting fundraisers, like one on Feb. 1 at Mountain Mike’s Pizza in Temecula, where 40% of proceeds will go to the cause. They’re also running a shoe drive with Funds2Orgs until March 27.

Since going public, the Purdys have connected with families in Alabama and Mexico who face similar challenges. They’re determined to spare others the hopelessness they felt upon learning of Paxton’s diagnosis.

"Paxton will be the first in the world to undergo this gene therapy," Paul said. "We’re not just doing this for Paxton, but for these other families too."

While Paxton’s future remains uncertain, the Purdys hold onto hope, fueling their mission to bring awareness and support to this ultra-rare condition.

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