Digby and Lisa
Living with Duchenne muscular dystrophy
Thousands of children across the UK are living with rare and devastating diseases that have no cures. Ten-year-old Digby is one of these children.
Digby is living with Duchenne muscular dystrophy, a rare genetic condition causing muscles to weaken over time. Digby’s journey with Duchenne began when he was aged two and his mum, Lisa, noticed he wasn’t reaching key developmental milestones.
Journey for children with Duchenne
By 10 to 14 years of age, boys with Duchenne lose the ability to walk and require a wheelchair full time. Sadly, this disease is fatal, and although some treatments are available to help slow its progression, they do not benefit all affected children. “The feeling that our son is on ‘borrowed time’ is heartbreaking,” says Lisa.
Digby receives a weekly treatment for Duchenne, which Lisa believes may be helping to slow down his decline. “Whilst we take each day at a time, we’re incredibly grateful that he’s still got his mobility at this point and leads as normal a life as possible — but this can change overnight,” says Lisa.
The feeling that our
son is on ‘borrowed
time’ is heartbreaking.
Partnerships powering research
More research is urgently needed to help children like Digby. Action Medical Research is funding work to investigate whether combining gene-based therapies with existing medications could improve their effectiveness.
This type of research to help children like Digby is only possible with support. Through their programme of bike rides, Action Medical Research have built a community of active givers, including biotech professionals.
Working in partnership with EBD Group, the charity is able to benefit from key life science events, like BIO-Europe, where initiatives such as BiotechBikers help power research through connections. Thanks to these connections, Action Medical Research can continue its fight against rare diseases and help change the lives of children like Digby’s.
Strength through support
Despite the challenges, Digby’s story is one of resilience and positivity. Through family support, groundbreaking research and a determined spirit, Digby continues to light up the lives of those around him.
