Aug 29, 2023
Thank you to everyone who suggested some brilliant names for our new XLH UK mascot! It was very hard to pick just one, but we’re pleased to say that the winning name is HUXLEY. Jane, her granddaughters and the cute soft toy family made by...
Aug 23, 2023
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...
Aug 23, 2023
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...
Aug 23, 2023
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...
Aug 23, 2023
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...
