A WEST Byfleet father is walking barefoot from Land’s End to Edinburgh to raise money to find a treatment for his daughter’s rare genetic syndrome.
Chris Brannigan, an army Major, set off on the 700-mile route on 6 July, with 25kgs (55lb) of kit on his back and wearing full combat gear, including body armour.
He is hoping to raise £400,000 for research into Cornelia de Lange Syndrome, with which his daughter Hasti was born. Chris has so far raised £308,424 during his challenging journey.
CdLS is characterised by reduced growth, developmental delay, feeding problems, speech and language difficulties hearing problems and, in many cases, limb abnormalities.
There is no treatment for CdLS and some of the effects can increase with age.
Hasti, who is eight, was born underweight and had to be fed by tube. She was slow to walk and speak and has daily injections for growth hormone deficiency but will always be very short.
She wants to be a chef or a dancer when she grows up.
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Chris and his wife Hengameh spoke to the News & Mail earlier this year when they set up the charity CdLS Hope for Hasti with the initial aim of funding research and development of a gene therapy treatment.
They raised £120,000 just before the COVID-19 outbreak took hold, forcing almost all their fundraising activities to be cancelled.
“We are running out of time to raise the money as mental decline will start at puberty, and that is not far away for Hasti,” Chris said.
Before he set off, he said: “I am doing this challenge to raise the funds needed to change her fate and to give her the future she deserves.
“I know it’s madness and I’m terrified of failing. It is going to be painful and I already have a knee injury, but I am a dad and I have to fight for my little girl Hasti and all the other forgotten children with this rare disease.”
As he passed through West End, Chobham and Horsell on day 15 of a walk expected to take 35 days, Chris was joined for a day by Jake Dean, a physical training instructor with the Coldstream Guards at Windsor.
“I heard that Chris was doing this walk and decided to join him for the day, to provide moral support and carry a collecting bucket. What he’s doing is really fantastic.” Jake said.
Follow Chris’s journey on Instagram and Facebook on @HopeforHasti and on Twitter on @brannigan001 and visit www.justgiving.com/campaign/hopeforhasti to support his fundraising efforts