In April 2026, I will be taking on the huge challenge of running the London Landmarks Half Marathon for children and families who are suffering with NKH. Most children diagnosed with this shit disease won’t reach their 1st birthday. My daughter Freya is 1 of around 500 children in the world with NKH. NKH is the worst disease nobody has heard off, our daughter needs 24/7 care, has multiple seizures per day. Has and will never have any body movement, is registered blind, can’t speak, or even smile. It’s such a cruel disease.

We are so close to gene therapy what could give us a longer future with our beautiful daughter all proceeds go directly to The Mikaere Foundation