THE parents of an eight-year-old girl with a rare genetic syndrome for which there is currently no treatment are trying to raise £2.5 million for research and clinical trials of a possible effective gene therapy.

Hasti Brannigan was born with Cornelia de Lange Syndrome (CDLS), which is characterised by reduced growth, developmental delay, feeding problems, speech and language difficulties, hearing problems and, in many cases, limb abnormalities.

Her parents, Chris and Hengameh, who live in West Byfleet, have raised almost £14,700 in a couple of weeks through a fundraising page. They have also set up a “100 burpees challenge” in which donors do as many repetitions of the exercise, involving a combination of press-ups and jumps, as possible and then challenge friends and family to do the same.

Participants have included David Atherton, the winner of the Great British Bake Off 2019, who is a family friend, and other GBBO contestants.

Chris said the first aim was to raise £400,000 into research to provide a proof of concept for a treatment, which would take about two years to complete.  

“We are focusing upon possible gene therapy solutions and are consulting doctors and scientists across the globe about how we can best achieve this aim,” he said.

Chris, who is a Major in the Army, was deployed to Afghanistan a few months after Hasti was born and had to return when she had to spend time in hospital.

“The day we received the diagnosis for CDLS was the beginning of the worst period of all our lives. I had begun the day thinking I would take Hasti to a routine appointment after which we had planned to go camping. The bottom fell from my world and I drove home trying not to cry in front of Hasti who didn’t know what was going on. I knew then that I have to do everything I can to save her from this fate.”

Hasti, who would like to become a chef and a dancer, has made steady improvements in some areas but has a rare form of CDLS, a dysfunctional HDAC8 gene discovered only a few years ago. Little is known about how this will affect her in the future.

Chris has set up a Facebook page from which he hopes to raise £400,000. The page One Pound Hope gained 700 members after just a couple of days and the idea is to make this 400,000 and ask each member to donate £1.

“It will divide the burden very thinly. We appreciate whatever anyone can give. It is great that some can donate £1,000 or £500 but the £1 donations are very helpful – its 400,000 tiny steps to finding a treatment,” Chris said.

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For the full story get the 6 February edition of the News & Mail