XLH is a rare metabolic disorder with lifelong health issues, which until recently was poorly understood.

XLH UK supports the UK community of patients and their families; organising events, raising awareness and supporting vital research into the multiple aspects of the condition. We also advocate for the development of new treatments and standards so that everyone with XLH can get their best care.

This amazing charity has become a part of our lives in the past 12 months since our 5 year old son, Sebastian, was diagnosed with this disorder, after many months of struggling to discover what the condition was that he has.

We would be grateful for any donation, however small, and/or support on the day of the half marathon in Gloucester. I chose to take on this challenge as it's something I have always wanted to do, and in my 40th year on this planet, I thought I'd give it a go (now or never as they say!) and at the same time raise awareness for XLH and XLH UK.

Thank you for reading xxx