A brave little girl from Wales is in a heartbreaking race against time. Three-year-old Katie Hughes had been suffering from seizures that doctors initially thought were just a high fever. But after persistent episodes, genetic tests revealed the devastating news that Katie has CLN2 Batten Disease. This rare and terminal disorder will gradually take away her ability to walk, talk, and see. The only treatment that can slow its progression – enzyme therapy – costs a whopping £500,000 each year and involves biweekly brain infusions.
With an NHS deadline looming that might cut off access to this life-saving treatment, Katie’s family is in a desperate fight to secure funding in time. For Katie’s parents, Grant and Jessica, and her seven-year-old sister, MacKenzie, it’s a battle not just against the disease, but against the clock. The family is determined to make every second count, creating cherished memories and taking Katie on magical adventures while she still can.
Jessica shares their heartache: “It’s too hard to sit and watch my little girl fade away. She’s only three, and she doesn’t understand what’s happening.” Despite the emotional toll, the family is determined to see Katie’s smile every day and feel her laughter.
The community has rallied around the Hughes family, launching a fundraiser to help with the staggering costs of treatment, special equipment, and dream trips for Katie. They’re hoping to give her the best days possible filled with love and joy.
If you can, please consider donating to help Katie and create those precious memories that every child deserves. Let’s come together and make a difference in this little warrior’s life!