A soldier completed a 700 mile trek barefoot to raise money for CdLS - but what is the genetic condition?

Wednesday, 12th August 2020, 4:27 pm
Updated Wednesday, 12th August 2020, 4:36 pm
Army Major Chris Brannigan, 40, is raising money to fund research into Cornelia de Lange Syndrome (CdLS), a rare genetic condition his eight-year-old daughter Hasti was born with (Photo: JustGiving)

A soldier returned to Scotland on Wednesday (12 August) to be reunited with his family, after a tough 700-mile barefoot walk which he undertook to raise money and awareness for his daughter’s medical condition.

Army Major Chris Brannigan, 40, is raising money to fund research into Cornelia de Lange Syndrome (CdLS), a rare genetic condition his eight-year-old daughter Hasti was born with.

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What is Cornelia de Lange Syndrome (CdLS)?

CdLS is a potentially life-limiting genetic disorder, which is present from birth.

The CdLS Foundation explains that CdLS is not usually inherited.

“It is usually due to an acquired change (mutation) in one of seven important developmental genes at or shortly after conception,” explains the foundation.

“The signs of CdLS may be obvious from birth or even prenatally, especially if severely involved, but may not be diagnosed until the child is older when it is milder.”

What are the signs and symptoms of CdLS?

CdLS causes a broad range of potential physical, cognitive and medical challenges.

Children with CdLS usually have low birth weight and the condition typically affects growth, resulting in the body, head and hands and feet being smaller than usual. Sometimes children with CdLS can have missing forearms and/or fingers.

Children with the condition may also have an upturned nose, eyebrows that meet in the middle, long eyelashes and low-set ears, alongside gastroesophageal reflux disease and a cleft palate.

Vision and hearing problems, seizures and dental problems are also common in children with CdLS.

Most children with CdLS also experience developmental delays, ranging from mild to severe intellectual disabilities, alongside behaviors similar to those common in children with ADHD, anxiety or autism.

The condition can also affect internal body organs including the cardiac and neurologic body systems.

What is the Barefoot Across Britain fundraiser?

Chris Brannigan set off from Land’s End, Cornwall and arrives at Edinburgh Castle on Wednesday 12 August.

His 700-mile journey took him through Cornwall, Devon, London, and a multitude of other villages, towns and cities as he headed up through England and into Scotland.

On his JustGiving page Mr Brannigan explained that from Monday 6 July, he would be walking 700 miles from Land's End to Edinburgh, doing so while carrying 25kgs of kit with everything he needs, including a one-man tent to sleep in.

During the journey, the soldier wore a full combat kit, including a body armour. However, one item of clothing that he didn’t wear during his trek across British was shoes, doing the whole journey barefoot.

The dad’s JustGiving page reads: “I'm a dad to a little girl called Hasti. Hasti is eight and she dreams of being a chef or a dancer when she grows up, but she also has a rare genetic condition which currently has no treatment or cure!

“I am doing this challenge to raise the funds needed to create a gene therapy treatment to change her fate and to give her the future she deserves.”

Mr Brannigan had to go to A&E halfway through the challenge, after suffering from open wounds and infections on both feet.

He told the Belfast Telegraph: "The journey's been the hardest thing I've ever done. Walking barefoot on our roads over 20 miles a day and carrying 25kg of kit has been like walking on glass.

"Fundraising's really difficult, we've been doing it since January to try and raise the money for CdLS, and we needed to capture peoples' imagination.

"Hasti's condition leaves her exposed to the world because of the difficulties it gives her, so it only feels fair that I do that myself."

How much did the walk raise?

So far, £313,000 has been raised for the walk, with the family initially aiming to make £400,000.

Mr Brannigan aims to raise a total of £2.5m to help provide treatment for Hasti and others with life-limiting conditions.

A petition delivered to Downing Street during the walk garnered more than 11,000 signatures in just two days.

How do I contribute to the fundraising appeal?

To donate money to the appeal, visit the Barefoot Across Britain fundraising page.