Leo’s Mission

Leo’s Mission

Leo’s Mission has been fundraising for XLH UK for many years. Robyn Sharp has XLH and her family set up the campaign in the name of Leo, Robyn’s son. Leo and his sister Eva both have XLH and have had to have surgery to relieve pressure on the brain. Leo’s Mission...
Battleborn Fitness NI

Battleborn Fitness NI

In April 2023, Jennie decided to run in Battleborn’s Fitness NI relay teams in aid of XLH UK at the Belfast Marathon. Jennie was diagnosed with XLH aged 10 and never thought running was something she’d be able to do. However, under the guidance of their coach Jonathan...

Jim’s story

Jim reflects on some of his passions in life. These have kept him going as a deterioration of his physical health, caused by XLH, has started to limit what he can do. His versatility (such as adapting his photography skills from BMX sports to birds) and his ingenuity...

Janet and Luke’s story

Janet and Luke (Janet’s son) were both diagnosed with XLH as children. Janet explains how her XLH diagnosis deeply affected her confidence, but it has never stopped her from working. Luke recognises that seeing his mum living positively with XLH empowers him to share...

Sally’s story

Sally is a positive person, but has had to find ways to accommodate a series of major leg operations. Sally shares with us what it is like to be a younger person with XLH and how she navigates everyday life on crutches. Her active social life is part of her approach...