Hope for Hasti campaign gains support across the country

THE Hope for Hasti campaign to find a treatment for a young West Byfleet girl’s rare genetic condition has raised more than £618,000.

Chris Brannigan, Hasti’s father, completed his epic 700-mile barefoot walk from Land’s End to Edinburgh, collecting nearly £355,000.

The Brannigan family celebrate being together again; Chris and Hengameh with Amir, Navid and Hasti

The initial aim of the charity, set up by Chris and his wife Hengameh, was to raise £400,000 to fund work on a proof of concept for a treatment for Cornelia de Lange Syndrome (CdLS).

Hasti, 8, was born with CdLS, which leads to reduced growth, developmental delay, feeding problems, speech and language difficulties hearing problems and, in many cases, limb abnormalities.

There is no treatment for CdLS and some of the symptoms are progressive.

The rest of the money raised will go towards funding clinical trials, which can cost millions of pounds.

Chris carried 25kg (55lb) of kit on his back and wore full combat gear for the 35-day walk.

The army Major stopped at many military bases and received support from serving and former service personnel and their families as well as people outside the military.

The donations came from nearly 20,000 people, including one who walked the 95-mile (154km) West Highland Way in three days and another who ran five marathons in 23½ hours.

Hasti runs to greet Chris as he completes his epic 700-mile trek in Edinburgh

“I have been so fortunate to have had support from many thousands of people, many of whom are now undertaking their own fundraising for Hope for Hasti,” Chris said.

Hengameh and Hasti and her brothers Amir and Navid were in Edinburgh to meet Chris when he finished his journey at the castle last Wednesday.

“Hasti ran down the road into my arms. After a whole month of travelling alone, it was emotional to see them all again,” Chris said.

He received an email from Jonathan Lord, the Woking MP, that read: “Well done on a truly epic, brave and outstanding achievement. Amazing grit, fortitude and courage, and an absolutely amazing sum raised for vital research.

“Your walk captured the imagination and support of so many people, right across our United Kingdom. With sincere congratulations and my warm best wishes to you and your family.”

Two days after he arrived in the Scottish capital, Chris was still unable to wear shoes because his feet were so swollen.

“I was in A&E twice during the walk; once because of open wounds on my feet and the second time because of an injury to my back on the second last day.”

As well as raising money for Hope got Hasti and awareness of CdLS, Chis wanted to raise the profile of other rare diseases. When in London, he was joined briefly by Hasti to deliver a letter and petition to 10 Downing Street calling for more support and handed in similar documents at the office of Nicola Sturgeon, the First Minister of Scotland, in Edinburgh.

“It has been an amazing journey. I met so many families who are in the same position as us,” Chris said.

“There are 7,000 rare diseases and 95% of them have no treatment options. This isn’t because they are so intractable that treatment can’t be provided but because the treatments are not deemed financially viable.”

Chris said his campaign seemed to touch the hearts of many people who cheered him on his way.

“I think everybody found the universal message of hope in trying to provide a sick child with a better future,” he said.

For more information, visit https://www.justgiving.com/campaign/hopeforhasti and https://petition.parliament.uk/petitions/330174

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