I’m attempting to walk 18 miles on 15 August, as part of Caring Matter’s Now’s London to Liverpool trek to celebrate the charity’s 25th birthday!

Over 12 days people will walk the 270 miles from Liverpool, where the charity was founded, to London, the home of the CMN clinic at Great Ormond Street Hospital  (where Soph has her appointments) and the amazing CMN research lab.

Our daughter Sophie is now 4, and the support we’ve received from Caring Matters Now has helped us navigate her CMN and the challenges that come with it. We’ve also made friends thanks to Caring Matters Now, and know Sophie can grow up knowing she’s not alone in her difference, so we’d like to give something back to them. We also want to support the research that Prof Kinsler is doing on a cure for CMN - ground breaking research that could save lives.