As Chris Brannigan walks alone along the back roads and trails of Maine, he carries a sign that asks one simple question: “How far would you go for your child?”

For Brannigan, the answer is as far as it takes. The 41-year-old major in the British army is walking barefoot from Maine to North Carolina to raise money for a gene therapy for his daughter and others living with a rare genetic condition called Cornelia de Lange Syndrome. On Monday, he walked from Gardiner to Brunswick – a distance of about 25 miles – finishing shortly before 5:30 p.m.

Hasti Brannigan Courtesy of Hengameh Brannigan

Brannigan started his trek on Aug. 31 with a goal of walking 1,200 miles from Bar Harbor to Jacksonville, North Carolina in 50 days. Carrying 55 pounds of supplies in his backpack, he walks up to 35 miles each day. Along the way, he will stop at children’s hospitals in cities such as Boston and Philiadelphia and will meet with supporters of his effort to raise $2.5 million to fund vital research to develop a gene therapy and conduct clinical trials.

Last year, Brannigan raised over $1 million by walking 700 miles across the UK.

Brannigan is walking barefoot to experience some of the difficulty his daughter, Hasti, faces every day as she deals with the challenges of living with a condition that is expected to drastically restrict her quality of life and require around-the-clock care by the time she reaches puberty.

Hasti has Cornelia de Lange Syndrome, or CdLS, which causes reduced growth, global developmental delay, cognitive impairment, premature aging and other issues. The rare condition, caused by a single gene mutation, occurs once in approximately 20,000 births. Without treatment, Hasti won’t be able to achieve an independent life, according to her parents.

Hasti, now a bubbly 9-year-old who wants to be a chef or a dancer, was diagnosed with CdLS when she was 6. But her parents knew something was wrong as soon as she was born and by the time she was 8 months old, she was so unwell that her father rushed from Afghanistan to be with the family.

Brannigan and his wife, Hengameh, started the charity Hope for Hasti after her diagnosis to raise money to create a gene therapy that allows CdLS children to live healthier lives. That research is being done at The Jackson Laboratory in Bar Harbor, where the gene therapy is currently being studied in mice and is nearing clinical trial. After clinical trials, the gene therapy treatment needs approval from the FDA.

Brannigan walks alone with no support crew, but is occasionally joined by supporters who walk a stretch with him to keep him company. To reduce costs, he camps out in people’s yards.

Chris Brannigan receives a donation from Mike Inniss of Harpswell during Brannigan’s barefoot march Monday along Route 201 between Gardner and Brunswick. At the end of Brannigan’s walking day Monday, online fundraising had reached more than $46,000. Carl D. Walsh/Staff Photographer

Brannigan, 41, has been posting video clips of his walk on the Hope for Hasti Facebook page.

On Sunday, Brannigan walked from Palermo to Gardiner, ending his day at the Gardiner Fire Department where firefighters donated $500 to his mission. Along the way, Brannigan walked across 2 miles of gravel and waded through flooded sections of trail.

“It’s like a spa,” he said as he walked through a muddy stretch of trail.

During a stop to use the restroom at a convenience store, a local man helped Brannigan pick out two American treats – Reese’s peanut butter cups and Cow Tails – to try for a Facebook video he dubbed “Chris’s Taste Challenge.”

“I quite like it,” he said of the peanut butter cups, which he rated as a 6 out of 10.

As he walked along Route 201 on Monday morning, a couple who support Brannigan’s mission stopped to give him cold water and fruit. Brannigan posted a live video on Facebook as he talked with the couple, then updated followers on his day. He said his feet are bleeding on the road and are very painful, but he didn’t want to stop because the weather was getting more uncomfortable.

Chris Brannigan does a live webcast along Route 201 between Gardiner and Brunswick on Monday. Brannigan talked about connecting with others in the rare-disease community during his journey. Carl D. Walsh/Staff Photographer

“It’s really humid here today. Even when I’m not walking hard, I’m just sweating and sweating and sweating. But it’s not that hot. It’s very unusual,” he said. “It’s hard work.”

Later in the day it rained and hailed, Brannigan reported in a phone interview after he reached Brunswick.

Brannigan said he has never walked barefoot as far as he is planning to on his U.S. route. He walked the 700 miles in the U.K. barefoot, he said, “but that’s almost half the distance I’m due to cover.”

He said he chose to walk barefoot because when he and his family started their fundraising effort, the world was gripped by COVID and other issues.

“It was a really, really challenging fundraising environment, and we knew we just needed to do something to grab peoples’ attention because there’s so little funding in the rare disease space for conditions like CdLS,” Brannigan said. “They just don’t get any funding from government or pharmaceutical companies, so we needed to do something that would make people look twice and take an interest.”

Brannigan said his feet started bleeding on the fifth day of his walk, “which is uncomfortable and painful.”

Chris Brannigan, right, joined by Stuart Aitken of Cumberland, walks along Route 201 between Gardiner and Brunswick on Monday. Brannigan said that, so far, the people of Maine “have been incredibly kind.” Carl D. Walsh/Staff Photographer

“I’m hoping I don’t get an infection because that could be serious and might take me off the road for a few days,” he said. “But it’s really hard to prevent against infections when your feet are against the road every day and, of course, against everything you find on the road.”

Brannigan said that, so far, the people of Maine “have been incredibly kind. They’ve been really generous with their time and donations.”

As of the end of Brannigan’s walking day Monday, online fundraising had reached more than $46,000 at GoFundMe.com/f/hopeforhasti.

During a live afternoon Facebook video update filmed while taking a roadside break, Brannigan talked about connecting with others in the rare-disease community during his journey. Earlier in the day, he met a family from Leeds whose daughter also has CdLS and they discussed their shared experiences with the disease. He also met two other people who shared their experiences living with rare diseases, he said.

“It’s tough meeting these people who have these difficult things going on in their life but are finding their own way through. That’s what this journey is all about,” he said. “It’s not about me tapping all over the country barefoot. It’s not about the distance. It’s about hopefully drawing rare disease families together.”

Staff Writer Meredith Goad contributed to this story.


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