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Chris Brannigan is a man on a mission. He walked 1,200 miles barefoot – from Maine to North Carolina – in order to fund gene therapy research for his 9-year-old daughter, Hasti, who suffers from the rare genetic disorder, Cornelia de Lange syndrome (CdLS).
According to the CdLS Foundation, those diagnosed with the condition experience development delays, behavioral issues, and gastrointestinal problems among other things.
They estimate the rare syndrome occurs 1 in 10,000 live births. The symptoms of the disorder worsen over time with over 60% of individuals with CdLS engage in self-injurious behavior “at least once a month.”
A Family’s Search For Answers Led To Her CdLS Diagnosis
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During an interview with Good Morning America this week, Brannigan stated that he and his wife “knew straightaway something was wrong” with their daughter as she was underweight and had her first seizure “within the first 24 hours.”
The developmental challenges persisted. “There were so many indications but the diagnostic odyssey in the rare diseases world is so long and painful,” Branigan explained. After Hatsi was misdiagnosed, her parents enrolled her in England’s 100,000 Genomes Project. Two years later, Hatsi was officially diagnosed with CdLS.
“The cycle of therapies and medical appointments is just never-ending,” Brannigan said. “If your child has something terrible like cancer, doctors know what to do because they’re well-practiced in those things,” he said. “But if your child has a rare disease, they just don’t know and that causes a lot of anxiety for parents.”
Brannigan then voiced what all parents know when dealing with situations like this: “Parents have to be experts because no one else is.”
The Walk For CdLS Research Begins
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Like all working parents with a child who has a rare condition, research funding might not always be available. So Brannigan took it upon himself to change that. “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.
“If you have a rare disease you don’t have the same treatment options or the same quality of healthcare so parents like us have to fight endlessly,” Brannigan continued. “The sad truth is there’s just no money for rare disease research so it’s left to families like ours to undertake these fundraising campaigns just so we can get treatments for our kids.”
A Father’s Journey
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Brannigan, a British army major, calls himself “Barefoot Soldier.” The fight for more research started in his native England when he walked 700 miles to Scotland in 2020. But why walk barefoot? “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.”
The pain he endured is only a fraction of what his daughter goes through on a daily basis. His journey through America took his 53 days through rough conditions. “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.”
But her will not rest until his daughter has the life she deserves. “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.”
How You Can Help In The Fight Against CdLS
Brannigan and his wife created the charity Hope for Hatsi in an effort to bring awareness and funds to CdLS. If you would like to help them achieve their goal of $3 million, please donate here.
