Co Down dad in £2.5m plea for research into his young daughter’s rare condition
A CO Down father is pleading to the public to help fund pioneering research that could transform the life of his eight-yearold daughter.
Hasti Brannigan suffers from Cornelia de Lange Syndrome (CDLS), a genetic syndrome for which there is currently no treatment available.
The neuro-degenerative genetic disease is characterised by reduced growth, developmental delay, and feeding problems, and can also cause speech and hearing difficulties and limb abnormalities.
Now Army major dad-of-three Chris Brannigan (39) and his wife Hengameh (41) are trying to raise £2.5m in order to begin clinical trials and potentially treatment for this life-limiting condition.
Speaking from his home in Surrey, Chris explained that he left his role as a linguist in Afghanistan in 2012, taking up the reins alongside his wife to care for their very ill baby daughter.
“Just after Hasti was born was a really difficult time. We had no diagnosis for her and while she had lots of complications, we were not aware of any underlying cause,” he said.
“At the point
I deployed to Afghanistan,
Hasti was about fourmonths-old. Hasti had a very, very difficult start in life. She had really severe feeding problems from birth and refused to feed for a really long time.
“She had severe acid reflux which was causing her a huge amount of pain. She also had a very strong texture aversion, so she wouldn’t touch a lot of things like toys and wouldn’t put certain things in her mouth.”
Having set up the Hope for Hasti charity in the last few weeks, Chris and Hengameh hope they will be able to fund research and eventually treatment for the condition, changing the life of both Hasti and other children around the world.
“Hasti is a really happy, bouncy eightyear-old. She loves to swim, dance, cycle and do ballet. But if you read the medical literature it is frightening,” Chris, who is also dad to Amir (12) and Navid (10), added.
“The vast majority of people with CDLS never become independent. Our hope is always for an independent life for Hasti, but to do that we need to find a treatment.
“The charity will be focused upon commissioning research with a view to finding effective therapies for this syndrome.”
While Chris admitted raising £2.5m is a mammoth task, he stressed that the family is focused on the initial £400,000 target. In the meantime, the family’s fund-raising efforts have already yielded more than £13,000 in two weeks.
Chris explained the support, particularly from back home in Northern Ireland, has been “amazing”.
“I have lots of friends back home I have lost touch with over the years. As soon as we shared our story, I started to get lots of messages from old friends and family friends who offered their support and made really generous donations,” he said.
With the future for Hasti entirely uncertain unless a treatment is found, Chris is pleading for help. “We need help from people, ultimately we can’t do it on our own,” he added.
For more info visit https:// uk.gofundme.com/f/hope-for-hasti