A new fundraiser to undertake the Yorkshire Three Peaks Challenge has been set-up by Craig Thomas, friend of Matthew Sutton and his family whose eight-year-old daughter Grace has Smith-Magenis Syndrome.
Speaking about support for families with children with SMS, Matthew revealed that he is in frequent contact with other families via a WhatsApp group where parents provide mutual support.
The family have attended events and conferences organised by the SMS Foundation to meet other children and adults living with the disorder, which he admits has been difficult at times.
We were invited to a meeting with other families with children with SMS and the first one was really tough for me. I found it very upsetting.
But the support network that this group has provided us has been so important. They listen to us and provide support when we need it.
The family have been keen to raise awareness, sharing their story with local newspaper The Liverpool Echo. Their full story can be read here.
In total, there will be 30 people taking part in the Yorkshire Three Peaks event on Saturday 16th August. The group plan to complete the challenge and camp on-site overnight, and then on Sunday they will join their families to take part in a walk around Sefton Park in Liverpool with Grace and her family.
The Yorkshire Three Peaks includes Pen-y-Ghent, Whernside and Ingleborough, and the total walking distance is 39.2km (24.5 miles).
Craig has set up a JustGiving page for donations if you would like to support this event.