My son has this disease. There is no cure. It’s progressive. It’s life limiting. It’s shit.

I’ve been to three funerals of children in the past 18 months because of this disease. Aubrey, Teddie and beautiful Phoebe ❤️

I wasn’t going to run next year but sitting in the car outside phoebes funeral I decided to apply - when it asks for your reason for running I simply put ‘Phoebe’

The Lily foundation are a small charity that fund research to hopefully find a cure. This probably won’t happen during pups lifetime but I’m doing it in the hope that one day another family won’t have to wish for just one more day with their baby.