Lauren Pineda
I was very fortunate to grow up with a great family. My mom and dad were probably the best parents (in my opinion obviously, I’m sure many others would get to say the same), and I also have a great relationship with my younger brother. One of the things that makes our family relationships strong is the lengths we will go for each other to help each other out. And the lengths this father goes for his daughter reminds me of that.
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Major Chris Brannigan is an army major based in Tidworth Barracks in Wiltshire in Scotland. His eight-year-old daughter Hasti has a rare genetic disease called Cornelia de Lange Syndrome (CdLS) that causes seizures and severe anxiety and also has no cure or treatment. So Chris did the next best thing he could do to help his daughter: he decided to walk a 700 mile journey barefoot to raise money and awareness for children suffering from rare genetic disorders.
He told BBC, “I wanted to raise money for the first ever gene therapy for the condition [CdLS] but I’m also trying to raise awareness of rare diseases in the UK. There are 7,000 rare diseases in the world and 95 per cent have no treatment at all. One in three kids with rare diseases doesn’t live to see their fifth birthday and those aren’t first world figures,” adding, “I think treatment needs to be a lot better in the UK.”
With the goal of raising money for gene therapy treatment for the rare genetic condition in mind, Chris walked from the city of Lauder and Edinburgh for his little girl. Starting the journey on July 6 in Lands End, he finally reached the end of his journey at Edinburgh Castle on August 12.
“It’s a tough challenge but I’m doing this for my little girl, to give her hope for the future,” he said, “Every painful step barefoot and every donation, no matter how small, hopefully means we are a step closer to funding research into treatments.”
The barefoot soldier described how walking in the heat in the middle of the summer wasn’t ideal, “It’s really, really hot. My feet are really bad. They are incredibly painful and it’s a bit like walking on glass,” he said. His walk was for the Hope for Hasti campaign, a fundraiser to raise money to help his daughter and more.
He wrote in the fundraiser description, “The aim of the charity is to fund the research and development of a ground breaking gene therapy treatment for children suffering from this terrible disease. The total cost is £400,000. 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.”
“From Monday 06 July, I’ll be walking the 700 miles from Land’s End to Edinburgh . I’ll be doing it while carrying 25kgs of kit on my back with everything I need to keep going, including my trusty one-man tent which I’ll be sleeping in to keep costs down. I will be wearing full combat kit including a body armour which will be heavy and hot. I will however be missing one element of my clothing …. my boots! I will do the 700 mile March BAREFOOT!”
“I know it’s madness and, if I’m honest, I’m terrified of failing. 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.”
