Chris marches barefoot in America to help Hasti

THE soldier who walked barefoot from Lands End to Edinburgh to raise money for research into his daughter’s rare condition has set out on an even longer fundraising trek.

Major Chris Brannigan, from West Byfleet, is aiming to complete 1,200 miles down the east coast of the USA, again without shoes.

Chris Brannigan – feet blistered and swollen – with Hasti after his 700-mile trek last summer

Chris raised more than £500,000 on his 700-mile march in the UK last summer, supporting research and an eventual treatment for the rare disease suffered by his nine-year-old daughter, Hasti.

On Tuesday this week, the 41-year-old began a new walk from Bar Harbor in Maine to Jacksonville in North Carolina, carrying all he needs to survive and camp out each night.

“I can think of nothing worse than having to walk barefoot again,” said Chris, who suffered agonising injuries to his feet during last year’s walk. “When I finished last year, I promised myself I would never do it again.

“I’m going to be carrying about 25 kilogrammes of kit on my back and I’ll be walking 500 miles further this time, so it can only be worse.

“I’m hoping that this long and painful journey can help raise the funds needed to create a gene therapy for children like Hasti.”

Chris, collecting bucket in hand, marching north with Edinburgh as his destination

Chris – a soldier for 14 years who has served in Afghanistan – expects to take 53 days to walk the 1,200 miles, walking up to 35 miles a day. His fundraising target this time is £50,000.

Hasti was diagnosed with a rare genetic condition called Cornelia de Lange Syndrome (CdLS) in 2019.

Chris and her mother, Hengameh, were heartbroken when they were told that her health could go into decline before she reaches puberty.

They now worry about how the potentially life-limiting and life-shortening condition, which has no cure or treatment, will affect Hasti’s future and her ambition to become a dancer and chef.

CdLS causes reduced growth, global developmental delay, cognitive impairment, premature aging, feeding problems, speech and language difficulties, hearing problems and, in many cases, limb abnormalities. It occurs just once in around 20,000 births.

Chris said that Hasti had helped him pack his bags for the US march. and added: “Over the last three weeks, we have been going for walks together,” he added. “It 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.

“It’s what any parent would do to ensure the best for their child, and we won’t stop fighting for a better future for those affected.”

Chris’s planned 1,200-mile route, and stopping points, down the east coast of the USA

Chris’s US adventure started at The Jackson Laboratory in Maine, which has made significant progress into finding a gene therapy for CdLS and is nearing the start of a clinical trial for potential treatment that could significantly reduce the associated conditions that CdLS patients experience as part of their daily life, and reduce some of the impact that ageing and puberty may have on CdLS children.

“Over the last year, we have made so much progress on our journey to create a gene therapy for CdLS,” he said. “The progress has been so fast that even the scientific experts, with years of experience in this field, are impressed by what we have achieved in such a short space of time.

“I am amazed how we have made it this far as, after all, just ordinary parents. The rapid progress is great news for my Hasti.”

* Donations to the latest fundraiser can be made at https://www.gofundme.com/f/hopeforhasti?qid=01e13481abe029cc024cec90efb82e4b

Chris’s journey can be followed on Instagram (@hopeforhasti) and on his Facebook page.

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