An army major is walking the length of the UK barefoot to help fund treatment for his eight-year-old daughter, who has a rare disease.
On Monday, Major Christopher Brannigan will begin his walk without shoes from Cornwall to Edinburgh via Downing Street while carrying 25kg kit to raise awareness of those affected by rare diseases.
Brannigan’s daughter, Hasti, needs treatment for Cornelia de Lange syndrome (CdLS) – a genetic disorder that impacts a baby's growth and development – to ensure she does not end up wheelchair-bound, mute, affected by seizures and requiring round-the-clock care.
According to the CdLS Foundation, it is unclear just how common the syndrome is but it is estimated that somewhere between one in every 10,000 and one in every 30,000 babies born have the condition.
The CdLS Foundation is aware of more than 400 children and adults with the syndrome in the UK and Ireland, and well over than 4,500 worldwide.
Brannigan hopes that money raised through the journey from Land's End to Edinburgh will help procure research for the first ever gene therapy treatment for CdLS and highlight the struggles of all those affected by similar conditions.
“Hasti's future depends on her receiving urgent treatment, now, before her condition deteriorates further,” Brannigan said.
“I have been astonished over the last eight years how little, if at all, rare diseases feature in medical training, how low general awareness is, and how underfunded rare disease care and research are.
'This needs to change, particularly given Covid.”
Genetic Alliance UK said patients with rare diseases, defined as affecting fewer than one in 2,000 people according to the European Commission, are among the most vulnerable to coronavirus as well as being hard hit by the measures put in place to contain and deal with the pandemic.
Brannigan added that he is prepared to “do everything it takes to improve Hasti's chances and support the millions of others who share my family's experiences and aspirations”.
“Children who suffer from rare diseases don't deserve to be neglected and forgotten,” he said.
Brannigan also plans to launch a parliamentary e-petition and deliver a letter to Downing Street on 21 July, where he will meet with Jayne Spink, the chief executive of Genetic Alliance UK.
The Second World War veteran pledged to walk 100 laps of his garden in the lead-up to his 100th birthday, a challenge that resulted in him raising more than £30m.