I’ll bare pain to give my little girl a better future
Army dad Chris tells Maria Croce he’s on march to help find treatment for rare condition affecting daughter
SOLDIER Chris Brannigan is days from arriving in Scotland as part of a gruelling 700-mile journey walking barefoot across Britain to raise money for pioneering research to help find a treatment for his daughter.
He’s expected to cross the border into Scotland on Sunday and will finish his challenge in Edinburgh after leaving Land’s End on July 6.
Chris is in a race against time to fight for his eight-year-old daughter Hasti’s future. She suffers from a rare genetic condition, which by the time she reaches puberty could restrict her quality of life.
Hasti dreams of becoming a dancer and chef but has been diagnosed with Cornelia de Lange Syndrome (CdLS) which leads to serious physical and mental challenges and has no treatment or cure.
In March, Chris set up the charity CdLS Hope for Hasti to fund the research and development of a ground breaking gene therapy treatment for children suffering from the disease.
“The cost is £400,000. 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,” he said.
It is a life-limiting disease and rare for children with CdLS to grow up and have independent lives.
Chris, 40, originally from County Down, now lives in Surrey with wife Hengameh, 42, and their children Amir, 12, Nabid, 11 and Hasti.
The Army Major has completed two tours of Afghanistan but said: “This is easily the hardest thing physically, mentally and emotionally I’ve ever had to do. I have to keep going for Hasti.”
He’s carrying 25kgs of kit with everything he needs, including a tent.
“Hasti had a single gene mutation and it’s just bad luck and it makes her life really hard in lots of ways and it leaves her exposed to the world in ways that feel so unfair,” Chris said. “I thought as part of the challenge I should expose myself to the hardship of the world as well and going barefoot seemed a good way to do it.”
One day, he took nearly seven hours to cover 10 miles but the thought of his daughter keeps him going.
“Every footfall was agony. I kept sitting and thinking, ‘How can I go on with this?’ and I would just return to Hasti and think, ‘How lucky am I?’ She can’t get gene therapy to make her healthier unless we can make it for her.
“When the pain and exhaustion gets too much and I want to give up, I just remember why I’m doing this - to give my little girl the future she deserves.
“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 and all the other forgotten children with rare disease.”
Chris has been hit by the physical impact of walking barefoot and at one point had to use crutches.
But people have come out to offer support, meals and medical advice for his injured feet, and donations topped £70,000 within a week. He said: “Every painful step barefoot and every donation, no matter how small, hopefully means we are a step closer to funding research into treatments.” Hasti’s mum Hengameh, said: “We want Hasti to be able to have the opportunities all other children have.”