When a loved one is going through a dark period in life, it is the family that goes the extra mile to help them overcome their ordeal. One father from the United Kingdom whose daughter suffers from a rare condition completed a 700-mile trek barefoot in order to raise funds for her treatment and provide her a future she deserves.
Chris and Hengameh Delfanineja, 42, were left devastated when their now-8-year-old daughter, Hasti, was diagnosed with a rare condition called Cornelia de Lange syndrome (CdLS) in 2018.
Unfortunately, there is no cure yet available for this disease; thus, Hasti’s parents set up a charity in March 2020 called “CdLS Hope for Hasti” in order to raise 400,000 pounds (US$522,788) to create a gene therapy treatment for children suffering from the same disease as their fun-loving child.
He further added: “I’ve been deployed on operations twice before - I see this as my third tour of duty; to fight to create a treatment for my daughter and other children like her.”
Enduring pain in his feet along with pus and days of waking up with sweat, the firmly resolute father didn’t stop until he completed his mammoth journey.
On Aug. 12, as Chris completed his barefoot journey, he and his family couldn’t be more grateful to have the support of kindhearted and generous people who have helped along the way.
Additionally, the family is also persuading people to sign a petition requesting the government to review its National Framework for Rare Disease, encouraging it to invest in research, earlier diagnosis, and cutting-edge treatments so that people who have been affected can be given a ray of hope.
