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Co Down dad Chris in 'race against time' to raise funds for research into child's rare health condition


An army major from Co Down has appealed for help as he faces a race against time to fund medical research to help his vulnerable young daughter.

Chris Brannigan (39) is working to support the NHS in planning the delivery of personal protection equipment (PPE) and mobile Covid-19 testing centres.

He has had to stay away from his young family in Surrey for the last five weeks, as his daughter Hasti (8) suffers from a rare neuro-degenerative condition requiring her to stay in isolation.

Cornelia de Lange Syndrome (CdLS) causes children to seriously deteriorate in adolescence, with symptoms including severe mental health challenges like self-harm, mutism, anxiety and depression.

There is currently no cure or treatment, but the family - including mum Hengameh (41) and children Amir (12) and Navid (10) - are raising funds for pioneering research into gene therapy which could give Hasti hope.

In January, a goal of £400,000 was set to fund initial research of which over £141,000 has been raised so far.

The money will pay to develop a 'proof of concept' treatment, which could then proceed to clinical trials.

Covid-19 has halted most fundraising events for now, but Hasti has been able to raise £1,200 herself with a cycling challenge.

Mr Brannigan said he is now fighting against the clock to give Hasti, and hundreds of others, a chance as the proposed therapy will not be effective in older children.

"It could be going a lot better if I'm honest, we've had to cancel dozens of fundraising events," he said. "But the difficult circumstances make the donations we are getting so much more special.

"I've been away from home for five weeks as it was just too risky to bring the virus home unwittingly while we're trying to shield Hasti.

"Being away has been really difficult. We celebrated my son's birthday last month and it was hard not being there for a proper celebration."

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Chris and Hasti Brannigan before the lockdown

Chris and Hasti Brannigan before the lockdown

Chris and Hasti Brannigan before the lockdown

He added: "In the past when I've been on army operations you at least knew your family was safe, but I don't want to be the reason I'm putting them in danger."

Mr Brannigan has been keeping up bedtime stories with his daughter via video call every night, but explaining the reality of Covid-19 has been hard.

"I think she understands the wider circumstances but doesn't really accept why I need to be away. She asks me every night, 'Are you coming home today, Daddy?' and I have to say no."

The family just need to raise a further £38,000 to start the main element of the research and take the first important steps toward developing an effective treatment for CdLS. Working closely with the famous Jackson Laboratory in the US, they are hoping to have a gene therapy ready for clinical trials in just two years.

Further information on Hasti's story is available at www.hopeforhasti.org. Details on the fundraising efforts can also be found by visiting www.gofundme.com/f/hope-for-hasti

Belfast Telegraph