CDKL5 deficiency is a rare X-linked genetic condition which results in early onset, difficult to control, seizures and severe neuro-developmental impairment.

Our darling nephew George was diagnosed with CDKL5 at just 5 months old. He overcomes daily challenges of his condition which includes seizures, unable to talk, move or feed orally. In the last 3 years he has overcome so many hurdles, as his auntie and uncle we are so proud of him and enjoy the rare smile he gives us. He is our motivation and inspiration to complete our running challenges for 2025.

I alongside side George’s dad and Uncle we hope to run 3 half marathons and one full marathon to raise money for CDKL5 Charity. This is a charity run by parents caring for children with CDKL5.

Inverness Half marathon - 9th March

Stornoway Half marathon - 24th May

Scottish Half marathon - 17th August

Loch Ness Marathon - 28th September

Thank you for your support and really appreciate any donations to a charity close to our hearts.