This article has been corrected. It previously said CDLS was a neuro-degenerative condition but this has not been proven. CDLS is a genetic disorder usually caused by a mutation in a developmental gene.

An army major left Afghanistan fighting against the Taliban to care for his unwell baby who had been rushed to hospital "going grey".

Chris Brannigan had to leave his wife, Hengameh, and his two sons, now aged 10 and 12, four months after his newborn daughter was born when he was deployed to Afghanistan in April 2012 as a linguist.

As he can speak Dari, his role with the Brigade Advisory Group was to aid communications between British forces and the Afghan National Army who were fighting extremist group the Taliban. But his time there was cut short just five months later due to an emergency at home.

Mr Brannigan, 39, said: “At the time it was an operation in Helmand. My commander came up to me and said, ‘Your wife has gone into hospital with your daughter. There is a helicopter on its way.’

“Within 40 minutes it was there and it took me to Camp Bastion. In less than 24 hours I was back home.”

Hasti, his youngest child, wasn’t well and had been rushed to hospital “going grey” and “losing colour”. She was only around 10-months-old at the time.

“It was really scary but not entirely out of the blue. I knew there was a sense of urgency and that Hasti was in trouble. It was a case of going back and looking after the home front,” he said.

For the next six years Mr Brannigan and his wife were in and out of hospital and consulting medical experts.

Hasti, now aged eight, was diagnosed in May 2018 with Cornelia de Lange Syndrome (CDLS) — a rare genetic disorder usually caused by a mutation in a developmental gene.

Mr Brannigan is now aiming to raise £2.5 million in order to commission an expert team to research treatments that, according to the West Byfleet father, do not currently exist.

Hasti loves dancing, swimming and cooking
Hasti loves dancing, swimming and cooking

Hasti’s symptoms include feeding problems, speech and language difficulties, and texture aversion. It has left Hasti with a growth hormone deficiency, so she is much shorter than her peers. She didn’t take her first steps until she was two and said her first word aged three.

Research by medical journal BMC, published in June 2019, examined changes in affect (mood, interest and pleasure) in individuals with CDLS and found there was a decline in interest and pleasure scores among the group.

Mr Brannigan, who acknowledged there is little existing research examining degeneration in relation to CDLS, said he feared Hasti could become socially isolated as she grows older.

Despite this, Hasti is a “really joyful” and “happy” young girl. Mr Brannigan said: “She does ballet and loves to dance and swim. She is like any other girl in that regard, but she just has some additional challenges to face.”

Mr Brannigan said: “We are really fighting and throwing everything we have at this. We spend a lot of time trying to bring her along, but in truth there is a really small chance of independence.”

Mr Brannigan with his wife Hengameh and children Hasti, Amir (left) and Navid (front)
Mr Brannigan with his wife Hengameh and children Hasti, Amir (left) and Navid (front)

The Hope for Hasti fundraiser aims to raise a large sum for gene therapy research which Mr Brannigan believes is the first of its kind in the CDLS sphere.

Put simply, the gene therapy would involve using AAV (adeno-associated virus) as a delivery mechanism which could transport and “drop off” parts of a new, healthy gene inside a CDLS patient’s body. Mr Brannigan said it could provide treatment which doesn’t currently exist.

“We were told it is ambitious and complicated, but not impossible. We can treat some of her symptoms, for example hormone injections to help growth and speech and language therapy, but it is less treating and more coping,” he said.

The first target is £400,000 to commission an expert team to create a proof of concept. Afterwards, the rest of the money is hoped to fund clinical trials.

To support, donate and read information about the campaign, visit the fundraiser page here. The Hope for Hasti Facebook page is here.

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