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The family created the charity, Hope for Hasti, in order to raise the money for research into CdLS gene therapy. After consulting doctors and researchers on how much would be needed to fund the research, they set a $3 million target.

\"Raising money has been incredibly hard through the pandemic so my wife and I decided that we should run a fundraising event that would help focus people on not just fundraising but also how difficult it is to manage the life of a child with a rare disease,\" Brannigan said.

According to Dr. Wendy Bickmore, director of the MRC Human Genetics Unit at the University of Edinburgh, gene therapy will likely not be a cure but a way to treat some of the disorder’s symptoms.

“Gene therapy encompasses several things,” Bickmore told “GMA.” “It can be adding back in an extra copy of the gene, which has been mutated, or it can be gene editing where you go in with these CRISPR molecular scissors and try and correct the actual spelling mistake of the genome. They both have the ultimate aim of trying to repair the genetic defect.”

All of the preclinical research will be handled by the Jackson Laboratory in Bar Harbor, Maine. According to Dr. Cathleen Lutz, the lab’s senior director, they’re working with mouse models with various genetic mutations, including one with Hasti’s specific mutation. As CdLS can be caused by any number of genetic mutations, a therapy that works for one may not work for another.

“I think we all recognize we’re in uncharted territory, no one is rushing here,” Lutz told “GMA.” “We’re trying to explore the potential for these therapeutics. Even if gene therapy turns out not to be a path forward for CdLS, we’re going to have so much information to plug into new potential therapeutics.”

In a recent statement, the CdLS Foundation announced a partnership with Jackson Laboratory to coordinate research efforts for all genes implicated in CdLS. The goals of the collaboration include advancing basic science around the disorder, creating a centralized repository of existing and new mouse models with CdLS features, and testing various treatment options.

\"PHOTO:
Courtesy Brannigan family
PHOTO: The Brannigan family in Edinburgh, Scotland, after the completion of Chris' first walk in August 2020.
>

A British army major, Brannigan calls himself the \"Barefoot Soldier.\"

\"The idea of being barefoot is to make it really difficult because Hasti's condition makes her life incredibly challenging,\" he said. \"Things that other children find easy, she finds very hard. It seemed only fair that I do something that was equally difficult and challenging.\"

Brannigan has already completed one barefoot walk so far. From July 6 to August 18, 2020, he walked 700 miles from Land's End in England to Edinburgh in Scotland.

\"I wounded both of my feet,\" he said. \"It took weeks for them to heal.\"

\"PHOTO:
Courtesy Brannigan family
PHOTO: Chris Brannigan, 41, on his current barefoot walk.
>

His current walk will see him do 1,200 miles through 12 states over 53 days. So far, Brannigan's made it well over halfway and expects to complete the journey in late October.

\"It's been incredibly painful and I think I have nerve damage in my foot,\" he said. \"I've cut my feet. I've stood on glass. I've had more blisters than I can count. I've encountered some really challenging road conditions and it's slightly dangerous.\"

Though Brannigan plans to finish out the walk no matter what, the kindness he's experienced along the way has kept his spirits up. People have walked with him for parts of the journey, given him food and drink, and even housed him for a night.

\"Hasti is a child like every other child who has hopes and dreams and we want her to realize those,\" he said. \"She deserves to be happy and healthy.\"

Editor's note: According to ABC News' Medical Unit, \"Although every disease is different, gene therapy can pose some risk to those who receive it. The 'good gene' that is intended to replace the mutated gene may accidentally go to the wrong place. This can lead to damage of healthy cells or overproduction of unwanted cells. A person’s body can also attempt to attack the drug which can lead to inflammation and illness. All of these risks should be researched and evaluated before doctors recommend gene therapy to a patient.\"

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