A PROUD dad has told how his brave daughter has battled to enjoy life despite her incurable disease. Josie Chubb, seven, was diagnosed with Ullrich congenital muscular dystrophy, a rare and incurable muscle wasting condition, in 2021. It took two years of medical investigations for the condition to be diagnosed.
It leaves Josie, from Lewes, struggling to carry out her day-to-day life. Her father James said: “Josie’s condition means she can’t run, jump, climb stairs or transition from seated to standing and everyday tasks are difficult without adult support. “But she is a bright, fun-loving little girl who loves nature and being outdoors.
Like most parents, the most important thing for my wife Charlotte and I is for our children to grow up happy and we strive to do everything we can to enable Josie and her brother, Harry, to fulfil their dreams.” Since Josie’s diagnosis, James has been working to raise funds and awareness of the condition. The Chubb's Crusade team, which raises money for Muscular Dystrophy UK (Image: Muscular Dystrophy UK) James said: “We knew nothing about muscular dystrophy before Josie’s diagnosis, but now we feel it’s our duty to raise awareness and promote understanding so that society as a whole can be more inclusive.
READ MORE: Shoreham: New salon cuts little girl's hair for charity “Charlotte and I want to raise awareness of Josie’s condition and the importance of research to find a treatment, but also feel it’s vitally importan.