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.