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09/03/2020

Folkestone Herald: Dad’s 1800km challenge in aid of fight against Rett Syndrome

In March last year Folkestone dad Timothy Jones set himself the challenge of running 5km every day for 12 months, to raise awareness and funds for the rare and devastating syndrome affecting his friends’ teenaged daughter.

Mr Jones’ self-imposed challenge has seen him run through hangovers, holidays, illness and injuries, in temperatures as low as -2C and as high as 41C; the latter during a trip to California over the summer. He ran during Storm Ciara and Storm Dennis, even completing a seafront run through the howling winds.

Despite these challenges – and having to find the time in between work and other commitments every day – not a single run was missed by the dedicated dad of two.

For every kilometre he ran, Mr Jones, 41, hoped to raise £1. He has now surpassed his goal, raising more than £3,370 for the cause, but is hoping to raise even more.

He was inspired to run by Hannah Johnsson, who was a happy and healthy child until, at 18 months old, she started doing things which concerned her parents – including pulling her own hair out and screaming uncontrollably.

A period of regression followed; the previously healthy girl couldn’t run or speak like other children, although she had learned to walk.

It was not until she turned three that Hannah was finally diagnosed with Rett Syndrome; a diagnosis which brought little comfort to her family.

The neurological condition affects just one in 10,000 children. It usually shows symptoms in early childhood, at around six to eighteen months old, followed by a plateau period.

Regression can then occur again during the child’s teenage years, as happened to Hannah.

By the age of 13, Hannah experienced this regression, losing her
speech, mobility, and hand function. She also developed epilepsy, heart problems and scoliosis along with a number of other health issues.

Her mum, Beth Johnsson, 42, Events and Campaigns Coordinator at Reverse Rett, said: “There’s only potential to get better if we can find a treatment or a way to reverse the symptoms. If she receives no treatment or intervention, the prognosis is life-limiting.

“Rett Syndrome is the leading cause of disability among females. We can change this in our children’s lifetimes. It’s not just a fantasy, it’s a tangible dream. We’re trying to get people behind that.”

Ms Johnsson currently lives in Surrey with her family but was born and raised in Canterbury. She became good friends with Mr Jones’ wife, who has also done lots of fundraising for the syndrome in Folkestone.

Reverse Rett, the national charity she works for, aims to deliver a cure for Rett syndrome in a timeframe which is “meaningful for people living with the condition today”.

The charity believes a cure is within reach and funding research could help change the lives of children living with the condition.

Mr Jones said: “Hannah was completely healthy at first before this earth-shattering diagnosis. Amazingly, the family has managed to cope all these years. The least I could do was try to raise money to support them.”

Mr Jones had initially hoped to run a half marathon to raise money for the charity – but after he fell ill, he had to change his plans, and instead decided on his daily 5km challenge, which he will complete on March 3. As 2020 is a leap year, his 365-day challenge will actually run over 366 days – meaning he will have run a total of 1,830km, or 1,137 miles.

On his Justgiving page Mr Jones wrote: “Research has shown that people with Rett 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.

“If a cure can be found then Hannah and all the other little girls with Rett Syndrome might be released from this and be able to live the life of a normal girl without the pain and limitations that affect them every single day.”

■ To support Mr Jones’ fundraising efforts, visit justgiving.com/fund- raising/timothy-jones8