A mum is taking to the streets and roads across the North West dressed as Mr Tumble, as she embarks on a series of sponsored walks to raise vital funds and awareness for a charity, working towards a cure for a rare genetic condition affecting her 14-year-old daughter.
Kylie Jones, who is an ambassador for Reverse Rett, is undertaking four sponsored walks during November in support of the charity, which works closely with Warrington Wolves to fund research and develop treatments for Rett Syndrome.
Her fundraising challenge, called Roaming for Rett, will see her cover approximately 30 miles across four walks, including a Warrington to Newton-le-Willows walk on Saturday, November 21.
Kylie is undertaking the challenge for her daughter Isla, 14, who was diagnosed with Rett Syndrome in June 2015 following genetic testing.
Rett Syndrome is a rare genetic neurological disorder which primarily affects girls and can cause severe physical and communication disabilities.
It affects approximately one in every 10,000 girls born in the UK, with around three to four babies estimated to be born with the condition every month.
For Kylie and her family, the diagnosis changed their lives.
Isla’s symptoms include an unsafe swallow and silent aspiration, meaning she has been fully PEG-fed for the past four years.
She has also lost her spoken language and purposeful hand movements, which have been replaced by repetitive movements such as hand wringing.
Other challenges include breathing irregularities, low muscle tone, gastrointestinal difficulties, disrupted sleep, teeth grinding, hyperactivity and self-injurious behaviours.
Kylie says Isla could potentially have been diagnosed around 18 months earlier, but her hospital test results were misplaced. The day before her second birthday, she was incorrectly diagnosed with autism instead.
Despite the challenges, Kylie has become determined to help change the future for other families affected by the condition.
She became an ambassador for Reverse Rett in November 2024 and says the role is something she takes extremely seriously and feels incredibly proud of.
She said: “Reverse Rett has shown me that you don’t have to face the challenges of caring for a severely disabled child alone.
“Although our small community shares an underlying sense of grief for the lives our children might otherwise have had, we come together to support one another, share experiences and celebrate even the seemingly smallest of milestones.
“Having that understanding and support from people who genuinely know what you’re going through is invaluable.”
Kylie is determined to keep campaigning for research and a cure, even if it comes too late to benefit Isla.
She said: “Even if a cure for Rett Syndrome isn’t found within Isla’s lifetime, I am determined to keep fighting for one.
“I want to help create a future where other families don’t have to experience the same devastation that comes with this diagnosis.
“If Isla’s generation cannot benefit from a cure, then I want to do everything I can to make sure future generations do.”
Four walks across the North West
Kylie has already completed the first leg of her November challenge, walking from Liverpool to St Helens on November 1 in an event organised by Isla’s respite facility.
Her remaining walks are:
– Friday, November 7: Wigan to Newton-le-Willows.
– Saturday, November 15: St Helens to Newton-le-Willows.
– Saturday, November 21: Warrington to Newton-le-Willows.
She is planning to complete the walks dressed as Isla’s favourite television character, Mr Tumble, hoping to attract attention and raise awareness along the way.
Kylie is encouraging people to support her by making cash or card donations if they see her out walking.
She will also be carrying a card machine, while donations can be made online through her JustGiving fundraising page.
Support Kylie’s Roaming for Rett fundraising appeal at https://www.justgiving.com/page/roaming-for-rett
Kylie dressed as Mr Tumble
The November fundraising activities are designed to raise as much money as possible ahead of Reverse Rett’s Big Give Christmas Challenge, which begins on December 1.
The matched-funding campaign means donations will be matched pound for pound, effectively doubling the money raised.
Reverse Rett is a UK-based charity founded in 2010 by parents of children with Rett Syndrome.
It works to accelerate research, clinical trials and the development of treatments, with the ultimate aim of finding a cure.
The charity also connects families with specialist clinics, provides educational events and health resources, and campaigns nationally and internationally to secure approval for new treatments.
Kylie has previously organised a range of fundraising activities, including tombolas, raffles, a bungee jump and completing the gruelling 100km Lake District Ultra Challenge.
And she is already planning her next major test.
In April 2027, she hopes to walk the entire length of Hadrian’s Wall over five days – a challenge covering approximately 84 miles (135km).
For Kylie, the fundraising is about much more than the money.
She wants to keep Rett Syndrome in the spotlight and help ensure that research continues to offer hope to families facing the same diagnosis.
She added that even those unable to donate could still help by showing their support as she passes through their communities, or by finding out more about the condition and the work of Reverse Rett.
Further information about the charity and its work can be found at https://www.reverserett.org.uk/
