Our gorgeous grandson, Samson, was diagnosed with Duchenne in 2015 when he was 3. The news was a terrible shock for the whole family but especially for our beautiful daughter, Lynnette, and her husband, Lex.

Through thick and thin they're embracing the challenges and although we live a way away we try to support them as much as we can. We have done some fund-raising for Action Duchenne but mostly we organise/host family parties, holidays, stays with Nana and Grandad for the children and special times with cousins and great-grandparents.

Our advice to other grandparents in the Duchenne community is simple: make happy memories and have fun.

We're looking forward to meeting other grandparents and children at the 2018 conference. See you there!