AN ARMY major is continuing his mission to fund the research and development of a gene therapy treatment to help his daughter and other children with the same rare disease.

Major Chris Brannigan, who is currently based in Upavon, completed another barefoot walking challenge but this time along the east coast of the United States of America.

His daughter Hasti, nine, was diagnosed with the disorder Cornelia de Lange Syndrome (CdLS) in 2018, which currently has no cure or treatment.

CdLS can cause reduced growth, global developmental delay, feeding problems, speech and language difficulties, hearing problems and limb abnormalities.

It means Hasti needs regular treatments, including injections everyday, as well as frequent hospital visits and extra help at school.

Salisbury Journal:

Hope for Hasti

Last year, he and his wife Hengameh set up CdLS Hope for Hasti, a charity aiming to fund the research and development of a ground breaking gene therapy treatment for children suffering from the disease.

“We are trying to raise £2.5m to create a gene therapy for CdLS. It is incredibly expensive and it is far more more money than Hengameh and I will ever earn in our lifetime or five lifetimes. So to raise the money we had to undertake another challenge,” explains the 41-year-old.

The money will not only fund the vital research to develop a gene therapy but also to conduct clinical trials.

Chris’ latest walk started at the end of August from the Jackson Lab in Maine, where work on a gene therapy is being carried out, before heading south to finish in North Carolina. The 1,000-mile barefoot walk took 45 days to complete.

Physical and mental challenge

He says it was “incredibly difficult” both physically and mentally adding: “It was a real challenge and very, very painful for my feet. I have lasting nerve damage now that hasn’t gone away unfortunately.

“I was quite isolated for a lot of the journey, walking through very remote parts of the United States, which made it a real mental challenge also.”

Despite this he says people he met on his journey were “incredible kind” and gave generously to support the cause.

Barefoot walk

This is not Chris’ first barefoot walk. Last year Chris set off from Cornwall to Edinburgh- carrying 25kgs of kit on his back, including a one-man tent.

“In many senses I knew what to expect and knew it was going to be physically arduous and mentally challenging but there were new challenges this time I hadn’t anticipated. Last time I had my family and I saw them every few days. I didn’t get to see them for almost two months so that was difficult.”

Hasti was unwell in hospital while Chris was away and he thought he would have to cut his challenge short to return home. Thankfully, she made a quick recovery and he was able to continue.

The walking challenge has also allowed Chris and the charity to forge new relationships with the Boston Children’s Hospital and the Children’s Hospital of Philadelphia which have centres of excellence for CdLs.

More money needed

“To-date we’ve raised about £1m, which is great, but still some distance off our fundraising target so our fundraising journey continues,” added Chris, who says raising this money “is only thing that matters to me really at the moment”.

“If we’re able to create a treatment that helps one person or 10,000 people I think that would be more than enough. We just want families to have hope that there are treatments available and their children can live happy, healthy, long lives.”

Thank you for your kindness

He thanked everyone who has made donations to support the appeal.

“For anybody that has done anything to help whether they raised £10 or £10,000 we genuinely feel indebted to them. Anybody whose helped us has gone a long way out their way to be kind to our family for know reason other than to do something generous. We really appreciate that,"

How to donate

To donate visit the charity's website: hopeforhasti.org

 

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