On 21st March I’ll be walking 22 miles from our home in Penymynydd to Everton’s Hill Dickinson Stadium, arriving before kick-off when they take on Chelsea at 5:30pm. It’s likely to take 8–10 hours. I hope to raise £7,000 (£1,000 for each colour of the Rainbow)

When Everton lit up the stadium in rainbow colours for Rupert, it meant more than I can put into words. Seeing the ground illuminated for our little boy, knowing the club we love was helping raise awareness of AHC was emotional, powerful and something we’ll never forget. In a moment that started from fear and uncertainty, the club gave us light and hope.

This walk is for my son, Rupert 🌈

Rupert has Alternating Hemiplegia of Childhood (AHC), an ultra-rare, life threatening neurological condition affecting around 1 in 1 million children. AHC causes seizures, episodes of paralysis, breathing difficulties and sudden medical emergencies. Twice he has stopped breathing. There is currently no cure, only symptom management.

Through Rupert’s Rainbow, we are raising awareness of AHC and fundraising £1.5 million so we can be financially ready for emerging treatment and cure in the United States.

I won’t pretend this walk will be easy. Rupert doesn’t sleep much, so neither do we. I haven’t exercised in months, most of that time has been spent in hospital by his side. I also live with neuropathy in my feet from chemotherapy after having cancer a few years ago.

But I’ve been inspired by each and every one of you who has stepped up for Rupert, whether through physical challenges, raffles, coffee mornings or simply sharing his story.

If you can support, donate or share, it would mean everything 💙🌈