An army major from Surrey has pledged to walk 1,200 miles barefoot across the US to raise money for a clinical trial that could potentially find a treatment for the developmental disorder his daughter, Hasti, has been diagnosed with.
Hasti has Cornelia de Lange syndrome (CdLS), which is a genetic disorder that is present at birth and is due to a gene mutation.
It can cause a wide range of physical, cognitive and medical challenges, the CdLS Foundation states, that it is now known as the CdLS spectrum disorder.
These may include growth challenges, delayed development, intellectual disability or learning disabilities.
Now, Chris Brannigan, 41, from West Byfleet, has challenged himself to completing a physical challenge so as to support research into finding a treatment for CdLS.
He has already walked 700 miles around the UK and raised £500,000, but is now taking his challenge to the US to raise further money. He will depart from Maine on Tuesday and head to North Carolina.
In total, Brannigan believes the journey will take 53 days and will see him carry a 25kg bag that contains a one-man tent.
“[The treatment] exists, it is on a shelf in a laboratory in Maine and we are currently about to start on efficacy trials, and all the staff are really optimistic about the kind of effect it will have,” he told PA.
“We are hoping we will be able to move straight into clinical trials early next year but that is dependant on us having the funds necessary, and hence I am undertaking this fundraising challenge.”
Speaking about how CdLS impacts Hasti, he explained: “It is multi-systemic so it affects Hasti in many different ways, it causes seizures, cognitive disability, learning disability, it has reduced Hasti’s growth velocity which means she is required to take daily growth hormone supplements.
“It affects her speech and language, she didn’t begin speaking until she was five so her ability to communicate is down. It means lots of things that other children find easy are quite difficult for Hasti, it’s quite isolating.”
You can support Brannigan’s fundraising efforts here: https://www.gofundme.com/f/hopeforhasti
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