A Linlithgow grandad will this week cycle 185 miles across nine Outer Hebridean islands to raise awareness and funds to fight Rett Syndrome.
John Henderson’s five-year-old granddaughter Emma was diagnosed with the neurological disorder as a toddler. She cannot walk and is locked in a body which does not 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. Human clinical trials are due to start later this year.
The UK charity ReverseRett was established in 2010 by families who wanted to contribute to the Rett Syndrome Research Trust, a non-profit organisation in the USA which believes in the prospect of a cure. So far more than £2 million has been raised in the UK.
Now John (73) is hoping to contribute at least £1,000 to the cause, by taking 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.
John said: “As a family we believe it is important to highlight and support ReverseRett in any we can, especially as a cure is in sight.
“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.”
Rett Syndrome affects girls around the age of 12-18 months. It is estimated to happen to 1 in 10,000 children, and is rarely found in males. 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.
Emma was born a happy, healthy baby in October 2013, but John’s daughter Alison and her husband Stuart noticed by the time she was nine months old 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.
Professor Adrian Bird at Edinburgh University has been involved in research which has given hope that the effects of Rett Syndrome are reversible.