Since Aug. 31, Chris Brannigan has been walking down the East Coast barefoot hauling a 55-pound backpack, in self-described pain and isolation, stopping only to take the occasional break and to sleep.
Brannigan is walking in honor of his daughter, Hasti, a 9-year-old who suffers from a rare genetic condition called Cornelia de Lange Syndrome (CdLS). Brannigan said he hopes to increase public awareness of the disease and to raise funds for research and creating a gene therapy.
Brannigan, a major in the British Army who lives in Surrey, England, with his wife Hengameh and three children, intends to walk along the Eastern seaboard for 1,200 miles, arriving at Camp Lejeune in Jacksonville, North Carolina, in late October.
“I’m doing the walk barefoot and totally isolated. I don’t have a support crew. There is no one walking with me. It’s very much like our journey as a family who has a child with a rare disease,” Brannigan explained Monday on the phone as he took a break somewhere between Meriden and New Haven. “It’s a very isolating experience.”
In January 2020, Brannigan and his wife founded Hope for Hasti, a charity to raise the funds for research at The Jackson Laboratory (JAX) in Bar Harbor, Maine.
According to the nonprofit biomedical research institution, 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, the syndrome has meant she is small for her age and didn’t speak for the first five years of her life, Brannigan said. Hasti – who will turn 10 in December – suffers from seizures and also experiences social anxiety and exhibits some self-harming behaviors. She was diagnosed in 2019.
“Hasti is a really happy, joyful little girl who loves to swim and dance and her real passion is cooking,” her father said. “She is always in the kitchen cooking with her mom. She wants to be a chef when she grows up.”
While there is still much to be discovered regarding this little-known syndrome, there have been some observations that have Brannigan concerned.
“Real worrisome things happen at around age 12,” Brannigan said. Children with CdLS then may become selectively mute and the self-harming behaviors might get worse, Brannigan said. “We are really afraid of those for Hasti.”
Brannigan added that becoming a chef might be a dream Hasti cannot realize unless she gets treatment. He said most children with CdLS don’t go on to be independent adults.
“They are either entirely dependent or at best, live a semi-independent existence,” Brannigan said.
After getting the diagnosis, the Brannigans sent emails and made phone calls to doctors and researchers, including Cat Lutz, Ph.D., director of the JAX Rare and Orphan Disease Center in Bar Harbor.
Lutz said treating rare diseases can be difficult because the number of diagnosed patients is limited.
“If your children had disabilities or if your child had a form of cancer or if your children had some other type of disorder, there are usually well-established medical professionals and courses of treatment that you could tap into because the research and the funding have been there for a long time,” Lutz said.
JAX researchers have created a mouse model to study the disease and its effects. They’ve replicated the patients’ skeletal deformities in the mice and can now test them for behavioral symptoms such as anxiety and sleep disorders.
The process will then move to coming up with a gene therapy that is safe and effective before moving to clinical trials, which are regulated by the U.S. Food and Drug Administration.
Lutz added that JAX works cooperatively with medical experts to help patients, but the input parents provide is essential.
“The parents are so instrumental. What you read sometimes in the scientific literature are not necessarily the daily concerns of the patients and their families,” Lutz said.
When treating a rare disease and the likelihood of finding a cure is low, Lutz said the focus should be on developing a treatment that can improve the patient’s quality of life as it exists, for example, by addressing issues like trouble breathing or coming up with more screening for newborns to detect and treat problems early.
Brannigan hopes to raise £100,00 (or nearly $137,000 in U.S. dollars), and – right now – has already raised £61,000.
His walk started at the JAX campus in Bar Harbor and on Sunday, he reached the JAX Farmington campus. Along the way, Brannigan stopped at Boston Children’s Hospital. where he is hopeful doctors will cooperate in developing therapy treatments for CdLS.
Among other institutions Brannigan wants to reach is the Children’s Hospital of Philadelphia and the National Organization for Rare Disorders (NORD) in Washington, D.C.
While the walk has been physically painful and emotionally exhausting, Brannigan said he has received “incredible kindness” from the American people, some of whom have offered him a place to stay, food to eat, donations and encouraging words – including a family who lost a young son to childhood cancer.
That family, recounted by Brannigan in a video posted on the “Hope for Hasti” Facebook page, actually crossed paths with Brannigan in England last year when he was on Day 4 of a 700-mile walk he did through England. Brannigan said that day was particularly challenging, and remembers the couple telling him to “just keep going.” He ran into that same family again earlier this month, as they happened to move to New England in the meantime. They pulled over to the side of the road to say hello at a location near Hartford.
Firefighters from New Haven hosted Brannigan for dinner Monday evening and presented him with a $2,000 donation.
Other than watching traffic on busy streets, Brannigan said the people he’s met have been friendly.
“Everyone I’ve met has been just incredible and just so kind,” he said. Follow Brannigan’s journey, tag along for part of his walk or get updates of his progress on Hope for Hasti’s Facebook page, Instagram or Twitter.