Army major to trek 1,200 miles barefoot to fund gene therapy for daughter
An Army major is to march 1,200 miles barefoot across the US as part of a £2.5 million campaign to fund a ground-breaking gene therapy treatment for his nine-year-old daughter.
Chris Brannigan, from West Byfleet, Surrey, is taking on the challenge to help pay for clinical trials of a potential treatment for the developmental disorder Cornelia de Lange syndrome (CdLS) which his daughter, Hasti, has been diagnosed with.
Major Brannigan has already walked 700 miles barefoot across the UK and raised £500,000 but will continue his campaign in the US, where the treatment is being developed.
He will set off on Tuesday from Maine and head to North Carolina, visiting the laboratory developing the treatment and other sites linked to supporting children with CdLS.
He anticipates it will take 53 consecutive days to walk the 1,200 miles, travelling up to 35 miles a day while carrying a 25kg kit bag, including his one-man tent.
The 41-year-old said the fundraising challenge was essential for the creation of the new treatment.
He told the PA news agency: “It 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.
“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.”
Describing the effect of CdLS on Hasti, he added: “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.”
He said that Hasti had been supporting his preparations for the trek and added: “She has been helping me to get ready and pack my bags, and over the last three weeks we have been going for walks together, which has been really good to spend time together but I hope she will miss me as I will be away for a couple of months.”
Maj Brannigan said that his previous barefoot trek in the UK had been “really painful” and led to multiple blisters and infections.
Maj Brannigan and his wife, Hengameh, have set up a GoFundMe page for sponsorship as part of their charity CdLS Hope For Hasti.
He said that the military community including at Upavon in Wiltshire, where he is based, had been extremely supportive and helped raise much of the money so far.
For details visit: https://www.gofundme.com/f/hopeforhasti
Published: by Radio NewsHub