I am walking 100km of the Thames Path, from Putney to Henley, on 10-11 September 2016. That's over two marathons, back-to-back, within 33 hours. This is to raise money for the Brittle Bone Society.

I used to think that brittle bones just meant that you had to be a bit careful. People without brittle bones break arms and legs: I just thought that you'd have a few more of these unfortunate incidents than most, and that maybe avoiding contact sports would be a good idea.

Then I met my now-wife's 13-year-old nephew. He's engaging, bright, a musical genius, and obsessed with flying. He also puts up with severe chronic pain, limited mobility, wheelchairs, social isolation, physical disfigurement, frequent hospital visits and all-day spinal operations.

He and others like him need support in areas beyond the obvious orthopaedic interventions, including physiotherapy, occupational therapy (mobility aids etc.), educational support and psychological help. In my nephew's experience, accessing these through statutory provision is an uphill, draining and endless battle.

The Brittle Bone Society "is the sole organisation set up to address the needs of people born with Osteogenesis Imperfecta (OI) in the UK and Republic of Ireland". They "work towards improving the quality of life for people diagnosed with OI  in the UK and the Republic of Ireland, providing advice, signposting and information, providing financial support for wheelchairs and equipment and raising awareness of the condition."

Thank you.