Bobbys story

Help Us Make Every Moment Count for Bobby

I’m Tamsin, Bobby’s aunt — and I’m raising funds to help my beautiful nephew and his family through the hardest time of their lives.

Bobby was born on 23rd October 2020 — a cheeky, giggly little boy who adores dinosaurs, Hot Wheels, and playing with his big sister Emily.

Until April this year (2025) he was a perfectly healthy, happy little boy. Running, laughing, learning — full of life.

Then, everything changed when Bobby lost his sight suddenly in the space of a week, he was diagnosed with Krabbe Disease (a form of Leukodystrophy) — a shockingly rare, incurable, and aggressive neurological condition that destroys the protective covering of the nerves in the brain and body. It’s devastating, fast-moving, and always fatal.

Since then, Bobby has already lost his eyesight and his ability to walk and it will continue to take more from our beautiful boy.

But through all of this — the hospital stays, the regression, the pain — Bobby still smiles. He still laughs. He is still the most loving, joyful little boy, even as this disease tries to take everything away from him.

In honour of Bobby, and to help others living with leukodystrophy, all donations be made to Alex TLC, a charity dedicated to supporting individuals and families affected by these rare and life-limiting conditions.

Every single donation — big or small — will help Alex TLC continue their vital work, and ensure Bobby’s legacy brings comfort and hope to others.

Thank you for taking the time to read this, and for standing with our family during the most difficult chapter of our lives. Your support means more than words can say.

With love and gratitude,

Tamsin

“Short life, big impact, brave Bobby”