RALEIGH, North Carolina — In August, we introduced you to a father from the United Kingdom, willing to do whatever it takes to help his young daughter who has a rare disorder. For Chris Brannigan, who is a major in the British Army, that means trying to raise millions of dollars to afford a possible treatment that could help his child his 9-year-old daughter Hasti who has a rare genetic condition called Cornelia de Lange Syndrome or CdLS.
Chris Brannigan started walking barefoot from The Jackson Laboratory in Bar Harbor, where a gene therapy is currently being developed for his daughter, and reached Raleigh, North Carolina on Monday, Oct. 18.
Brannigan walked 1,000 miles. No support crews. Just him and the road and his 55-pound military backpack. Brannigan was alone except for the kind people he met along the way who walked with him or offered him a bed at night so he didn't have to sleep in his tent on the side of the road.
Ever since their daughter was diagnosed with CdLS three years ago, Brannigan and his wife, Hengameh, have had the goal of finding a treatment that might help her live a more independent life. The Brannigans founded a non-profit called "Hope for Hasti" and have been working to raise $3.5 million, the cost of the gene therapy being developed at The Jackson Laboratory. Currently, there are no treatments for people with CdLS, which affects around 1 in 10,000 people. Brannigan said the treatment can have the most impact on Hasti if she gets it when she is young, so he is fighting against time to raise enough funds before his daughter hits puberty.
Along his 45-day walk, Brannigan raised around $125,000, a far cry from the $1 million he raised last year when he walked 700 miles across Great Britain. The Brannigans still have about $2 million they need to raise, and while that number might overwhelm most, Brannigan isn't dismayed.
"I feel great," Brannigan said the morning after completing his march. "We’ve achieved a lot during this journey. We connected with the Boston Children's Hospital and the Children's Hospital of Philadelphia, which is amazing because they are really powerful allies to have on this rare disease journey."
Brannigan heads home to the United Kingdom on Friday, Oct. 22, and is understandably anxious to see Hasti, his two sons, and Hengameh, who managed all his travel arrangements while he was on his trek.
People may wonder, why barefoot? Brannigan said because the journey of having a rare disease is really hard and really lonely.
"We are really confident that we are going to get to the end that at the end of this tunnel will be a treatment for Hasti and for other children who have Cornelia de Lange Syndrome," Brannigan said.
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