An military major from Surrey has pledged to walk 1,200 miles barefoot throughout the US to raise cash for a scientific trial that would doubtlessly discover a therapy for the developmental dysfunction his daughter, Hasti, has been recognized with.
Hasti has Cornelia de Lange syndrome (CdLS), which is a genetic dysfunction that’s current at delivery and is due to a gene mutation.
It could cause a variety of bodily, cognitive and medical challenges, the CdLS Foundation states, that it’s now generally known as the CdLS spectrum dysfunction.
These could embody development challenges, delayed growth, mental incapacity or studying disabilities.
Now, Chris Brannigan, 41, from West Byfleet, has challenged himself to finishing a bodily problem in order to assist analysis into discovering a therapy for CdLS.
He has already walked 700 miles across the UK and raised £500,000, however is now taking his problem to the US to raise additional cash. He will depart from Maine on Tuesday and head to North Carolina.
In whole, Brannigan believes the journey will take 53 days and can see him carry a 25kg bag that accommodates 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 instructed 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 defined: “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 assist Brannigan’s fundraising efforts right here: https://http://www.gofundme.com/f/hopeforhasti