This Dad Is Walking Barefoot Across The East Coast To Save His Daughter Who Has A Rare Genetic Disorder
Philadelphia, Pennsylvania. 41-year-old Chris Brannigan is 29 days into a barefoot journey across the East Coast, and he’s painstakingly making his way across America for one important reason.
Chris is a military veteran and dad to 9-year-old Hasti, a little girl who wants to be a dancer or a chef when she grows up.
Not long after Hasti was born, she was diagnosed with a rare genetic disorder known as Cornelia de Lange Syndrome (also shortened to CdLS).
“It is usually due to an acquired change (mutation) in one of seven important developmental genes at or shortly after conception,” the CdLS Foundation explains.
“The signs of CdLS may be obvious from birth or even prenatally, especially if severely involved, but may not be diagnosed until the child is older when it is milder.”
“It causes such a broad range of potential physical, cognitive and medical challenges that it is now known as the CdLS spectrum disorder.”
Facebook; pictured above is Hasti
CdLS is so rare that it only occurs in 1 in 10,000 children that are born, and since the symptoms can be so wide-ranging, it can frequently be incorrectly diagnosed.
Unfortunately, there is not a cure or treatment available for CdLS, and so Chris is setting out to do something about that.
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Last year, Chris created a charity organization called CdLS Hope for Hasti with the goal of raising enough money to pay for research into CdLS which will hopefully result in a way to treat Hasti and other children who have CdLS.
“We are running out of time to raise the money as mental decline will start at puberty, and that is not far away for Hasti,” Chris explained on a JustGiving page he created.
“Last year I walked 700 miles BAREFOOT across the UK and raised £500,000, however, we need to raise at least £2.5 million to make this treatment a reality.”
In order to continue raising money for CdLS research, Chris started walking barefoot from Maine to North Carolina on August 31st.
Facebook; pictured above Hasti holds up a t-shirt that says, “How far would you go for your child?”
The trip will take him 1,200 miles across the east coast, and he’s doing it all barefoot.
“I know it’s madness and, if I’m honest, I’m terrified of failing,” Chris continued.
“It is going to be painful and I already have a knee injury, but I am a dad and I have to fight for my little girl Hasti and all the other forgotten children with rare disease.”
Chris currently has made it to Philadelphia, Pennsylvania, and you can follow along with his journey here.
Chris has also created a GoFundMe page which you can donate to here if you would like to.
Facebook; pictured above is Chris is Boston recently
More About:Human Interest
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