A COUPLE from Midsomer Norton are taking on a 100-kilometre challenge across two days in September to raise money for a charity close to their hearts.

Tanya and Alex White are taking on a the South Coast Ultra Challenge from Eastbourne to Arundel on September 7 as part of the South Coast Striders team, raising money for Reverse Rett.

The charity helps families affected by Rett Syndrome through support, as well as advocacy and research into a cure for the neurological disorder.

Rett Syndrome affects around 1 in every 10,000 people and is more common in girls. The neurological and developmental disorder causes issues with the muscles that control movement, coordination and communication. Often, babies with Rett develop normally until they are around six months old, but the condition causes them to regress and lose mobility over time. Diagnosis usually happens between the ages of one and two.

Tanya and Alex noticed their daughter, Layla, was showing signs of Rett Syndrome early in life. Layla was diagnosed with Rett in May last year - a few months after her second birthday.

Mum Tanya said: “Mobility was always the major concern, however, during the summer of 2022 we had noticed a host of further symptoms and unusual habits materialise. It was evident that Layla was globally delayed, and she started to display a range of behaviours such as clenching, shaking, constant mouthing her hands, biting and jerking upon waking.”

Layla requires a high level of care as she needs support to sit up, eat and communicate. Tanya and Alex have developed a system that allows Layla to have a voice despite her inability to speak - the family use flash cards to ask questions and Layla uses eye movement to select a choice.

The couple recently had an eye gaze device on loan from a charity which they say has been “transformative” in terms of being able to communicate with their daughter. Daily therapies, such as physio, hand use and speech and language are all a vital part of Layla’s daily routine.

Tanya and Alex are fundraising for their 100km challenge. To donate, visit the link in the article or scan the QR code. ( )

Tanya explained: “Layla understands what is going on, she just cannot communicate her needs verbally due to her condition. At first, it did feel quite isolating because I didn’t know anyone else who was going through what we’ve experienced with Rett, but we’ve since come into contact with a couple of families from Stroud and, even more locally, Cranmore who have children with Rett Syndrome.

“We’ve really been feeling the love from the community too.”

Tanya and Alex told The Journal that members of local community Facebook groups had been supportive in sharing Layla’s story. One person held a raffle and a cream tea locally for 15 people and raised around £1,000 for Reverse Rett. Lucy Sidwick from Zen Rebel Studios has also been hosting a bingo fundraiser on the first Saturday of the month for the charity.

Reverse Rett has provided hope to Tanya and Alex for Layla’s future. The charity has been working hard to accelerate treatments and find a cure for Rett. The charity say the UK Rett Syndrome community is at a pivotal moment, with two clinical trials of gene therapies underway. Reverse Rett set up the Rett Registry UK, a national registry of people with Rett syndrome in the country.

Tanya and Alex are still training and fundraising ahead of their challenge. If you’d like to donate, visit: bit.ly/LaylasStoryReverseRett. Tanya, who is an Ambassador for Reverse Rett, is also currently looking for support from local businesses ahead of the 15th Reverse Rett Gala. If you can help, get in touch by calling 07557 447246 or email: [email protected]