British Army Major Chris Brannigan is making a barefoot trek from Maine to North Carolina because of a rare condition his 9-year-old daughter Hasti deals with every day.
The “barefoot soldier” does not sugarcoat it. Walking 1,200 miles with no shoes on is terrible.
“It’s so painful on my feet. I have nerve damage on my feet. I’ve had more blisters and cuts than I can count,” Brannigan said. “It’s really just to make it hard because Hasti’s journey with a rare disease is hard. There’s no money for research.”
Hasti was diagnosed with Cornelia de Lange Syndrome (CdLS), a rare genetic mutation that impacts multiple systems within the body and affects a child’s physical, cognitive and emotional development.
“What’s scariest for us is that it gets worse. At about age 12, kids start to go downhill a bit. They can start self-harming in very serious ways that they need to be restrained. They can become mute; they stop talking. We just can’t imagine that for Hasti, so we’re fighting every day to create this treatment,” Brannigan said.
Following her diagnosis, Brannigan said his family began asking questions and realized they had to do whatever they could to help bring about a treatment. The Hope for Hasti charity raises money that will go to research a gene therapy regiment for children with CdLS.
Brannigan partnered with The Jackson Laboratory in Maine, and money raised from his efforts will go to researching CdLS and running trials at the facility for genetic therapeutics.
“Even if it isn’t going to work for Hasti because she’s 9 and will be 10 next year, if it works for even one family, that’ll have made it all worthwhile.”
Hasti is an “amazing, bubbly little girl,” who Brannigan said he misses deeply in the six weeks he’s been walking alone through the U.S. One weekend, the 9-year-old experienced a serious seizure that landed her in the hospital.
Brannigan decided to continue on with completing the walk only after she improved. His leg through Central Virginia is toward the end of the path.
“I’m in the final third of this thing, and literally just before I met you I thought it’ll be so good to put some slippers on,” Brannigan said.
The sign that tops his 50-pound pack of provisions asks a simple question of others: How far would you go for your child? Brannigan’s answer is clear as he carries it down the road.
“We couldn’t sleep at night knowing that we didn’t throw everything at this, that we didn’t uncover every stone and try to do everything to make her as happy and healthy as possible,” Brannigan said.
Since funding for research into rare diseases like CdLS, which affects one in 20,000 births in the U.S., Brannigan hopes his effort drives attention to the cause and money toward a treatment. Those who have the means can donate here.
By Jake Burns, WTVR.