Thank You for taking the time to visit my JustGiving page.

Ciara Louise Fowler, aka ‘Kiki’

19/09/2009 - 6/10/2023

I apologise for asking during these difficult financial times. If you can spare any amount, no matter how small, you will be helping to consign this cruel illness to the history books.

On the 8th & 9th June, I’m joining an amazing group of parents and supporters of the Reverse Rett charity to walk 100km in the Lake District. We’re doing this non-stop … with no sleep.

PS - it's NOT a relay ... I'm ACTUALLY walking 100km!!

I’ve been a supporter of the amazing work of Reverse Rett since I met Ciara several years ago. My wonderful wife Jane was caring for Ciara, providing a few hours of respite for her truly amazing family. As I often do, I tagged along … then “Kiki” smiled at me and that was that, I was hooked on doing anything I could to help fund research into a cure for Rett Syndrome!!

Devastatingly, Ciara passed away in October 2023 at the age of 14. To continue her legacy I’m raising money so that this cruel condition can be cured. It’s heartbreaking to know that Ciara and her family will not benefit from any future treatments or a cure, but so many other girls and their families will.

A little about Rett Syndrome:

Rett Syndrome is a post-natal neurological disorder, which most often affects little girls, and is usually diagnosed around the age of 12-18 months.

Estimated to affect 1:10,000 people, Rett Syndrome is most often seen in girls and women because the gene which causes Rett is on the X chromosome. Girls and women have two X chromosomes whereas boys have one.

Most children and adults with Rett are unable to speak, walk, or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal, and orthopaedic issues are common.

Research has shown that people with Rett Syndrome do not have brain damage. They know and understand much more than their bodies allow them to show – but they are locked in, trapped by a body that cannot obey signals from their brain.

Since the turn of the New Year, it has been announced that the UK Medicines and Healthcare products Regulatory Agency (MHRA) has given its approval for two separate Gene Therapy clinical trials to commence here in the UK.

This is absolutely HUGE news in the drive for an ultimate cure for Rett Syndrome, but we can’t stop fundraising to pay for this research … until this horrible illness is eradicated.

THANKS GUYS!!!

**Massive Thanks to Ciara's utterly selfless family for allowing me to use a photo of their precious and special little lady xxx

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