A father has committed to walk barefoot for 1,200 miles to raise funds for his daughter's much-needed gene therapy. Chris Brannigan, 41, has been walking across American states without his shoes for more than a month for Hasti, his 9-year-old daughter, who has a rare condition known as the Cornelia de Lange Syndrome or CdLS.
Brannigan and his wife, Hengameh, established the Hope for Hasti foundation in January 2021 to help with research on CdLS. They hope that one of these studies could eventually develop a gene therapy that may prolong the life of those who have the condition.
However, Brannigan told People that coming up with the money to fund the research has been challenging, especially with COVID-19. Thus, the dad decided to walk for a cause and raise awareness to encourage donations.
What is CdLS?
According to the National Institutes of Health, CdLS is a gene mutation and a type of developmental disorder that may cause growth delays, limb defects, intellectual disability, and changes in the person's facial characteristics. Most cases of CdLS occur in patients with no history of the disorder, and the condition may occur in one in 10,000 to 25,000 individuals.
Aside from slow development in children, symptoms of CdLS may include autism tendencies, gastrointestinal problems, myopia, heart defects, hearing loss, excess hair growth, and seizures.
Brannigan said they knew right after Hasti was born that something wasn't right because she suffered a seizure within 24 hours. For the first year of her life, Hasti could not eat right, and she learned to say her first word at five years old.
Doctors told the parents that CdLS has no cure, and if she lived past the age of 12, her health would deteriorate. It was a future Brannigan, and his wife couldn't accept. To realize their dreams of creating the right gene therapy for Hasti, the family needs to raise $3.5 million.
The Barefoot Soldier's Journey
So, on August 31, Brannigan set off his walk for a cause in Maine. He plans to reach a Marine base camp in North Carolina. In between stops, the father would talk to people about why he is on this challenging journey, risking his health and not minding some cuts and wounds to his feet.
"I'm not some kind of endurance junkie," the dad said. "I'm really just doing this because it's a way to get people to focus on this issue and hopefully help us raise the money we need."
However, this is not the first barefoot journey for Brannigan, a British military member. He also marched miles across Cornwall in England and Edinburgh in Scotland for Hasti and raised $500,000.
If Brannigan reaches his goal, the funds will go to The Jackson Laboratory in Maine once the research receives approval from the U.S. Food and Drug Administration to go on human trials. Currently, the CdLS study is under pre-clinical testing, and if the gene therapy proves to be safe and effective on humans, Brannigan's fundraiser will help expedite the next steps.
