8-Year-Old's Life Hangs in the Balance: Family Hosts Events for Rare Genetic Cure
A Community Rally for a Noble Cause
The Purdy family from Murrieta is reaching out to the community with a heartwarming event featuring mini golf, laser tag, and go-karts. Their goal is to raise essential funds to fight against an ultra-rare genetic disorder affecting their 8-year-old son, Paxton. The event promises fun for all ages while supporting a meaningful cause.
Paxton's Battle with CLCN6
At just eight years old, Paxton Purdy faces the challenges of CLCN6, an extremely rare genetic disorder that leads to progressive neurodegeneration. Diagnosed when he turned seven, Paxton's condition affects all aspects of his development, from speech to motor skills. His brave journey underscores the pressing need for research and effective treatments for this little-known disease.
The Cure CLCN6 Fundraiser Event
On June 1, the Muligan Family Fun Center in Riverside County will host the Purdy family's Cure CLCN6 Fundraiser from 1 to 5 p.m. Attendees can enjoy various activities while contributing to the cause, with 10% of every purchase supporting the family's nonprofit organization. To ensure contributions go directly to Paxton, guests are encouraged to bring a digital or printed flyer to present at registration.
A Family's Tireless Pursuit of a Cure
Over the past year, Paul and Kristin Purdy have dedicated themselves to finding a treatment for Paxton's condition. Paul's research led them to the University of Massachusetts Horae Gene Therapy Center, where scientists are developing innovative gene therapies. Their mission is to create the first clinical trial targeting Paxton's unique genetic mutation, a critical step toward halting or reversing his neurodegeneration.
Facing the Financial Hurdles
Developing a gene therapy to treat CLCN6 is an expensive endeavor, with costs estimated at $1.5 million. So far, the family's GoFundMe campaign has raised $82,091, highlighting the community's support but illustrating the significant financial gap that remains. Efforts like Kristin Purdy's participation in 'The Super Mom' competition aim to bridge these gaps by securing additional vital funding.
Conclusion: Hope and Community Support
The Purdy family's unwavering determination to save their son and aid others battling CLCN6 is inspiring. Through events, fundraising campaigns, and community engagement, they are paving the way for potential breakthroughs in treatment. The collective support from Riverside County reaffirms the power of community in the face of rare and challenging medical conditions.
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patch.com