October 03, 2021
Chris Brannigan is walking barefoot in a country where he doesn't know anyone to raise money for his daughter's rare genetic disorder.
Many parents would do anything in a heartbeat to save their child's life, even if that meant walking hundreds of miles. This is what Chris Brannigan is doing for his daughter, Hasti, and he's doing it barefoot.
Hasti was born with a rare genetic disorder, Cornelia de Lange Syndrome (CdLS), which affects her executive function and causes seizures and anxiety.
According to the 41-year-old dad, they already knew that something was not right with their daughter. Within the first 24 hours of her birth, Hasti already had a seizure. He added:
“She wouldn’t eat willingly for the first year of her life. It took her five years before she even said a word.”
Six years later, Hasti was officially diagnosed with a condition that had no apparent treatment. However, Chris and his wife, Hengameh, refused to accept the fate of their daughter.
"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 […]," Chris said.
In addition, Hasti's health could decline as soon as she reached puberty, making their race against time much more difficult. Although they know the condition is permanent, Chris and Hengameh could not bear just to stand and watch.
Earlier this year, the couple created Hope for Hasti to help find a treatment for CdLS. They aim to find a treatment that could improve their daughter's health and overall wellbeing, hopefully giving her a chance at a normal life.
To raise awareness and money for gene therapy for CdLS, Chris is walking hundreds of miles from Maine to North Carolina barefoot. He needs to raise three and a half million dollars for the treatment and testing, so he thought of the best way to get people's attention despite its challenges.
"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," Chris said.
Chris is not the only father who has gone the extra mile for their child. Previously, France-based engineer Jean-Louis Constanza built an exoskeleton to help his son, Oscar, walk.
Oscar was born with a genetic condition that robbed him of the ability to be mobile. But with the device, Oscar has a chance to be more independent.
Sadly, not all dads were given the opportunity to become their child's hero. Previously, a grieving father, Li Gang, completed a marathon in tribute to his son, who passed away in a drowning accident shortly after they registered for the race.
Meanwhile, Trevor Gernon mourned the passing of his son, Cash, whose body was found on the street after being kidnapped. The father blamed himself for what had happened, although it was not his fault.
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