A British father who pledged to finish a 1,000-mile barefoot march down the East Coast of the U.S. in support of his daughter, who is suffering from a rare disease, has come to the end of his journey, 20 pounds lighter and worried about potential nerve damage in his feet.
But the father, Chris Brannigan, has raised nearly $140,000 for Hope for Hasti, a charity he founded with his wife, Hengameh, in January 2020 for research at The Jackson Laboratory (JAX) in Bar Harbor, Maine. The march – 45 days walking through 12 states – officially came to an end Monday as Brannigan marched to the finish line at Raleigh Fire Station #1 in Raleigh, North Carolina.
Brannigan’s grueling expedition began in Maine on Aug. 31 as a fundraising effort for research and creating a gene therapy for a rare genetic condition called Cornelia de Lange Syndrome (CdLS). His 9-year-old daughter, Hasti, has been diagnosed with CdLS.
While Brannigan said his march has increased the visibility of the disease through media coverage, it has also meant being far away from Surrey, England, where he lives with Hengameh and their three children.
Brannigan said that Hasti has been sick recently and at one point was hospitalized due to complications from CdLS. While he couldn’t get into details – Hasti is now back home – he said the separation from his family has been difficult.
“Not being there, not being able to help – it’s been a really stressful time,” Brannigan said in a phone interview on Sunday morning. “She is home now and she’s feeling well now thankfully.”
As far as the physical toll the walk took on his own body, Brannigan said the experience hasn’t been easy.
“I am definitely a lot leaner than I was. I think I’ve got nerve damage in my feet. My feet are really sore, shooting pains in my feet,” Brannigan said. “But there is not much I can do about that now.”
Brannigan will head back to England later this week, but first he will make another stop at Boston Children’s Hospital on Wednesday, following up his initial visit there in September. The biggest success of the walk is the connection Brannigan made with medical staff there and at Children’s Hospital of Philadelphia, which he hopes will host clinical trials for the gene therapies in the future.
“We are really hoping that the pre-clinical study is going to give us some really good efficacy data early next year,” Brannigan said.
According to JAX, a nonprofit biomedical research institution which also has a location in Farmington, CdLS affects around 1 in 20,000 births. The genetic mutation can affect physical and mental development including the formation of forearms and hands, anxiety, learning disabilities, premature aging, and selective mutism. The mutation is believed to be random, not typically inherited.
For Hasti, who was diagnosed in 2019, the syndrome has meant she is small for her age. She didn’t speak for the first five years of her life. Hasti suffers from seizures and also experiences social anxiety and exhibits some self-harming behaviors.
JAX researchers have created a mouse model to study the disease and its effects. They’ve replicated patients’ skeletal deformities in the mice and can now test them for behavioral symptoms such as anxiety and sleep disorders. The process will next move to developing a gene therapy that is safe and effective before clinical trials, which are regulated by the U.S. Food and Drug Administration.
The rareness of the disease means it doesn’t get the attention, money, and investment that other afflictions do, Brannigan said.
“As a family, it is really hard to manage all of this where we are two working parents looking after three kids, one of whom needs a lot of additional support,” Brannigan said. Where families dealing with cancer and other illnesses have experts and treatments available to them, families dealing with rare conditions like CdLS have to go to greater lengths to find answers for their loved ones.
“It just feels really unfair,” Brannigan said.
But Brannigan said the march has brought the stories of those living with CdLS to thousands of people, an awareness that he says can make all the difference in finding a cure.
Through the barefoot march, Brannigan has found other families dealing with CdLS – one with a 7-year-old girl who has many of the same challenges as Hasti. The mother of a 2-year-old boy who was diagnosed when Brannigan was in New York in September, was able to make contact with Brannigan after Googling the condition and finding out about his march.
“She reached out and was very thankful we were able to share our experiences with her and give some hope for the future,” he said. The public can still donate and keep updated about the family’s journey on the Hope for Hasti’s Facebook page, Instagram or Twitter.