Hope for Hasti as barefoot dad nears Yorkshire on marathon trek

The so-called Barefoot Soldier was making his way, one painful step at a time, towards Yorkshire as part of a trek from Land’s End to Edinburgh to fund research into the rare genetic condition that afflicts his daughter.

Eight-year-old Hasti Brannigan was born with Cornelia de Lange Syndrome, which causes seizures and severe anxiety and has no cure or treatment. But she was diagnosed with the condition only two years ago.

Her father hopes his 700m walk, which is now in its third week, will raise £400,000 towards an eventual goal of £2.5m. After the first 300m, donations had reached £140,000.

Yesterday’s leg, south-to-north through the Rutland villages and market towns that separate Northamptonshire from Lincolnshire, was a molehill on the mountain he has yet to climb, and with his yellow collection bucket under his right arm, he took it in his stride. By day’s end he was in Grantham, at the Prince William barracks, ready for today’s haul RAF Syerston, near Newark.

Tomorrow he will reach Ollerton, south of Worksop, before crossing the border on Friday, en route to Doncaster.

Yesterday, Rutland’s High Sheriff, Richard Cole, and members of the Army’s 7 Regiment, Royal Logistics Corps, were among those willing him on. It was a typical turnout on an adventure that has seen well-wishers turning out on to the streets sometimes in their hundreds.

“It’s what any parent would do to ensure the best for their child,” said Maj Brannigan, who is 40 and based at Tidworth Barracks in Wiltshire. “We won’t stop fighting for a better future for those affected.”

The handicap of walking barefoot had taken its toll, and at one point he resorted to crutches. But he said: “When the pain and exhaustion gets too much and I want to give up, I just remember why I’m doing this.

“This is both the best and worst thing I have ever done – nothing could have prepared me.

“Every painful step barefoot and every donation, no matter how small, hopefully means we are a step closer to funding research into treatments.”

He and Hasti’s mother, Hengameh, do not know how her condition will manifest itself in years to come. She is one of only around 400 people to have been diagnosed with Cornelia de Lange Syndrome.

Mrs Brannigan, an IT worker at the British Council, said: “It was so hard knowing something was wrong, but not receiving a diagnosis for so long – when we found out there was no treatment our hearts broke. We just want Hasti to be able to have the opportunities all other children have.”

The family us urging the Government to review the National Framework for Rare Disease, and to invest in research and earlier diagnosis to give hope to people affected. A petition, which Maj Brannigan delivered to Downing Street as he walked through London, was signed 11,000 times in two days.

“The support we’ve received so far has been incredible but we know can’t do it on our own,” he said.

His daughter says she wants to be a dancer and a chef when she grows up. But experts say it is rare for children with her condition to lead independent lives.

Maj Brannigan’s five-day route through Yorkshire will take him first to Doncaster on Friday, followed by a hike north to Selby on Saturday.

He will spend Sunday night in York before going on to Ripon, and finally arriving at Catterick on Tuesday night before an onward journey through the north-east and Scottish lowlands.

Donations can be made online at www.justgiving.com/fundraising/BarefootAcrossBritain and his petition for research on Hasti’s condition is at petition.parliament.uk/petitions/330174.

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