Hi, we’re the Booth family—Lizzie, Dan, Charlie, and Freddie—from Stoke-on-Trent, UK. Our beautiful boy Charlie was born seemingly healthy in October 2021, but shortly after birth, he began experiencing seizures. This marked the start of a challenging journey.

We spent a month in the NICU as doctors worked tirelessly to manage Charlie’s seizures and uncover their cause. Just before we were discharged, we received a life-changing diagnosis: STXBP1 disorder, a rare neurological condition. Since that day, we’ve been navigating this new world—one filled with challenges, but also incredible love, resilience, and joy.

Charlie, along with his brother Freddie, fills our lives with so much happiness. While we’ve learned to embrace our unique journey, the ever-advancing world of science has offered us something we never thought possible: hope for a cure. Gene therapy could transform the future for children and families like ours.

In light of this, starting on the 28th May, Dan has taken on an extraordinary challenge to help make that hope a reality: running 5 marathons in 5 days! It’s an incredible physical and mental undertaking, all in the name of raising vital funds and awareness for STXBP1 research.

Here’s how you can join us:

Donate:

Every contribution, no matter the size, makes a huge difference.

Run with Dan:

Join him for moral support along the way, any distance is welcome. Piggy backs also appreciated.

Walk or run wherever you are:

Spread the word and help raise funds in your community.

Excitingly, multiple therapies are already in development, with clinical trials on the horizon. However, a critical piece of the puzzle remains: identifying biomarkers—key indicators that could provide early insight into whether these therapies are working during the trials.

The money we raise will directly support this vital research, helping to uncover these biomarkers and bringing us one step closer (or one run closer!) to finding a cure. Together, we can make this breakthrough a reality!

We firmly believe this gene therapy has the potential to change not just Charlie’s life, but the lives of so many others affected by STXBP1. Every donation, act of support, and shared message will help bring us closer to that goal—and we will be forever grateful.

Thank you for being part of this journey with us. Lots of love,

The Booths 💙