Meet Rosie. She is a beautiful, cheeky 4-year-old girl who loves animals and dancing to the Wiggles. Tragically, Rosie is currently fighting a cruel and devastating diagnosis: Batten Disease (CLN2). This is a rare, disorder that progressively destroys nerve cells in the brain and retina, causing blindness, loss of motor skills, and premature death. It is so rare that it is estimated only 30 to 50 children in the entire UK are living with this specific type of Batten Disease.

Watching Rosie face this battle with such courage is what has inspired me to get a group of us to take on an extreme physical challenge. On 12 September 2026, I will walk 100km in a single 24-hour period to raise vital funds for Batten Disease Family Association to help fund research and support for Rosie's future.