Lockdown stalls bid to find cure for sick Hasti

A Co Down father, working in support of the NHS, is in “a race against time” to raise money for research into his daughter’s rare genetic disorder after the coronavirus pandemic stalled fundraising.

Wednesday, 20th May 2020, 4:29 pm
Updated Thursday, 21st May 2020, 5:00 pm
Chris Brannigan and his daughter Hasti, who has a rare genetic disorder

Chris Brannigan, 39, an Army major, who lives in Surrey, launched a campaign in January to fund research into Cornelia de Lange Syndrome (CdLS) which his eight-year-old daughter, Hasti, was born with. So far the campaign has raised £140,000, but another £38,000 is required to start this vital research.

CdLS is a rare genetic disorder caused by a mutation in a developmental gene. Children with the condition often deteriorate once they hit puberty, which results in severe depression and anxiety, mutism and self-damaging behaviours.

There is currently no cure for CdLS, so Chris and his wife Hengameh, who have two other children, Amir, 12, and Navid, 11, have been desperately trying to raise funds to develop a gene therapy treatment that could help Hasti and hundreds of others like her across the world.

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Mr Brannigan, who is working to support the NHS in planning the delivery of personal protection equipment (PPE) and mobile Covid-19 testing centres, said his family has been under ‘colossal pressure’ over the last few weeks.

“The difficulty Covid has presented us with is that we are trying to shield Hasti. This means I have had to stay in barracks and live away from the family for weeks on end. My wife has to live at home and be a schoolteacher, a mum and a housekeeper, while also working full-time.

“Fundraising has slowed down. Every day that passes when we haven’t been able to raise the needed funds, is another day I blame myself for not being able to help my own daughter and that is heart-breaking.”

Mr Brannigan left his role as a linguist in Afghanistan in 2012, taking up the reins alongside his wife to care for Hasti.

“Being a parent to a child with a rare disease is a lonely place. Because CdLS is a rare disease, the truth is most medical professionals haven’t heard of it and don’t understand it. And receiving a late diagnosis hasn’t helped us.”

Mr Brannigan said the family are working with a “fantastic” laboratory in the US to develop a treatment.

“They are supremely confident that we can do this, so it is just a question of raising the money to make it happen and to make a treatment for Hasti and other kids with CdLS a reality.”

Mr Brannigan said the support from back home in Northern Ireland has been “completely amazing”.

“I’ve lived away from home for 14 years, so to have the community suddenly stand up behind us and offer so much support has been really heart-warming”