Dad’s 700 mile trek to fund his daughter’s care takes in Tyneside
AN Army major walking 700 miles barefoot to fund treatment for his seriously ill daughter has arrived in Tyneside on the 31st day of his epic journey.
Chris Brannigan is walking from Land’s End to Edinburgh without his shoes on, carrying 25kg in full combat kit and body armour, in a bid to fund research and gene therapy to change his daughter Hasti’s fate.
Hasti, eight, was diagnosed in May 2018 with Cornelia de Lange Syndrome (CDLS) – a rare genetic disorder which has no treatment or cure.
Her symptoms include feeding problems, speech and language difficulties, and texture aversion.
It has left Hasti with a growth hormone deficiency, so she is much shorter than her peers.
She didn’t take her first steps until she was two and said her first word aged three.
He embarked on his mentally and physically challenging journey on July 6 in hopes of raising £400,000 for the research and development of a gene therapy treatment that could help Hasti.
“Hasti is eight and she dreams of being a chef or a dancer when she grows up, but she also has Cornelia de Lange Syndrome which currently has no treatment or cure,” said Chris, who had a tour of Afghanistan cut short when his daughter’s health started to deteriorate in 2012.
“The future isn’t bright. Hasti has a rare form of this already rare disease, a dysfunctional HDAC8 gene discovered only a few years ago, little is known about how this will affect her in the future.”
The dad-of-three has been on the road for 31 days now and arrived in the North East on Friday.
On Saturday he walked from Durham to Gateshead, reaching the Millennium Bridge in the afternoon. Chris spent yesterday walking the 33 miles to Otterburn.
He was accompanied on this leg of his journey by Matthew Rich, from Throckley, Newcastle, whose two daughters have a rare and incurable condition called Batten disease.
As he arrived on Tyneside, Chris said: “It’s been the best and worst of times. I’ve cut my feet, I’ve had open wounds on my feet, I’ve had days where walking on the road has felt like walking on glass.
“But I’ve experienced so much kindness from total strangers, who’ve driven for miles to find me and make a donation, or walk with me.
“People have been incredible – the reception in the North East has been really warm, people have been beeping their horns, clapping for us.”
On why his story has struck a chord with so many, he said: “It’s hope.
“I think people understand our situation could be theirs.
“Everyone can have a sick child and everyone wants to believe something can be done to make sure their child enjoy a healthy and happy future.”
Chris added: “It’s been really good having Matthew with me today.
“I reached out to the Rich family before I started fundraising because I saw their story on the news.
“I reached out to them as parents of a child with a rare disease and they gave me lots of great advice at a time when I was struggling to know what to do.
“There are so many similarities between their story and ours – difficulty in getting a diagnosis, getting coordinated care, fighting against a system that doesn’t want to give you the things you need to make your child well.”
Chris has three days left before he arrives in Edinburgh.