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A Devoted Dad Is Trekking Hundreds of Miles Barefoot To Support 9YO Daughter With Rare Genetic Disorder

A Devoted Dad Is Trekking Hundreds of Miles Barefoot To Support 9YO Daughter With Rare Genetic Disorder

The 41-year-old's gesture attempts to raise money to create a gene therapy for the disorder called Cornelia de Lange Syndrome (CdLS).

This incredible father is not just talking the talk but he's walking the walk...Chris Brannigan is quite literally walking barefoot from Maine to North Carolina in an effort to raise funds for a gene therapy to help his daughter Hasti. The 9-year-old has a rare genetic disorder called Cornelia de Lange Syndrome (CdLS). "We knew as soon as Hasti was born that she had some challenges and things weren't quite right. She had a seizure within 24 hours of being born. She wouldn't eat willingly for the first year of her life. It took her five years before she even said a word," The 41-year-old told PEOPLE (The TV Show!).   



 

Chris and his wife Hengameh were told there is no treatment for the condition that was officially diagnosed 6 years later. "It's really, really terrifying because for us, we have such a bright and bubbly little girl in Hasti, and she loves life. But from about age 12, all the studies show that children with CdLS have declining executive function, they have an increase in aggressive behaviors, in ADHD, in autistic spectrum disorder type behaviors, and in some cases they become mute. We just don't want that for Hasti."



 

The couple ended up being the founders of Hope for Hasti "with the aim of creating a therapy that can treat CdLS. Our hope is that while this will never cure the condition, that it can elongate our life, that it can improve her health and her health span, her cognitive ability, and hopefully someday enable her to have an independent life," he said. "We need three and a half million dollars to make this a reality for kids. So we knew we had to do something big, something really to grab people's attention."

Source: Just Giving

According to the BBC, the army major previously walked 700 miles barefoot from Land's End to Edinburgh in the United Kingdom last year. He helped raise £500,000 (a little over $672,000) at the time which went to fund pioneering research at The Jackson Laboratory in Maine, US. "The research and treatment for Hasti and for children with CdLS is going really well. We know the treatment is safe and we're currently testing it to understand how effective it is," he said."We are really hopeful that we'll have a gene therapy that's ready by early next year. But the problem is, clinical trials and to actually be able to give it to children costs millions and millions of pounds and we just don't have that sort of money. So we're fundraising the only way we know how."



 

Despite the barefoot trek across the United States being "agonizing," the devoted dad isn't giving up. "Lots of people walk and cycle, but we thought we need to do something really that will make people look twice, and we'll hold their attention. That's why we decided to do it barefoot. Walking's easy, barefoot it's so very, very hard. Just like Hasti's journey," he shared adding that "every time I feel like I'm tired and I want to stop, and it's painful, I just remember that being able to choose is a luxury that she doesn't have."

If you would like to donate to Hope For Hasti you can do so here and here.