Linlithgow granddad cycles 185 miles across Outer Hebrides for charity

John Henderson and his five-year-old granddaughter.
John Henderson and his five-year-old granddaughter.
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A caring granddad has returned from a gruelling 185-mile cycle ride across the Outer Hebrides for charity.

John Henderson, from Linlithgow pedalled the nine islands to raise awareness and funds to fight Rett Syndrome which affects his five-year-old granddaughter Emma.

Supporters and wellwishers have helped John smash through his £1,000 target with nearly £1,500 raised to help find a cure.

“As a family we believe it is important to highlight and support ReverseRett in any we can especially as a cure is in sight,” said John, 73.

“The first clinical trial of gene therapy on a girl with Rett Syndrome is imminent. As ever funding is the key and we need to keep the donations coming in if we are to set our children free.”

Emma was diagnosed with the neurological disorder as a toddler, meaning she cannot walk and is locked in a body unable to obey signals from her brain.

Researchers from Edinburgh University are working towards a cure for Rett Syndrome, by using genetic engineering to replace a missing protein.

Experiments in a mouse made the symptoms of the condition go away – with human clinical trials due to start later this year.

John took on the challenge of cycling from the southern tip of Vatersay through Barra, over to Eriskay, then on to South Uist, Benbecula, North Uist, Berneray, then over to Harris and Lewis, finishing at the Butt of Lewis.

Rett Syndrome is found mostly in girls around the age of 12-18 months with an estimated one in 10,000 children affected.

Children with Rett are unable to walk or use their hands and often deal with breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopaedic issues.

Research has shown children with Rett Syndrome have no brain damage and they understand more than their bodies allow them to show.

Born a happy and healthy baby in October 2013, Emma’s parents, Alison and Stuart, noticed by the time she was nine months that she had some delays in her development.

Despite reassurance from their doctors, the family continued to seek medical advice and in December 2016 Emma was diagnosed with Rett Syndrome.

Co-founder and clinical trial leader at UK charity ReverseRett, Andy Stevenson said: “We’ve now sent almost £7 million to Rett research and almost all of it comes from families or supporters like John who are connected to somebody with Rett Syndrome.”

Anyone wishing to donate to John’s fundraising efforts can do so at