Major Chris Brannigan’s trek from Land’s End in Cornwall all the way to Edinburgh Castle caught the attention of the former Arsenal and England star who featured the heart-rending story of a debilitating condition on his new podcast series.
The fund-raising efforts also led to an appearance for Chris and Hasti on the BBC’s One Show earlier this week.
Nine-year-old Hasti suffers from the rare genetic disorder, Cornelia de Lange Syndrome (CdLS), for which there is no cure.
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Chris and his wife Hengameh, who have two other children, Amir, 12, and Navid, 11, have been desperately trying to raise funds to develop a gene therapy treatment that could help Hasti and hundreds of others like her across the world.
Originally from Castlewellan, Chris now lives with his family in Surrey.
On the ‘Everyday People’ podcast with Ian Wright, Chris explains how the Covid lockdown last spring meant his plans “fell off a cliff edge,” forcing him to come up with an extreme fund-raising idea that would really capture people’s imagination.
He explains how the pain of walking barefoot quickly became almost unbearable, and how his feet were “in ribbons” within a mile of setting off.
However, he said to himself, “if I don’t finish this thing, Hasti’s life isn’t going to change”.
CdLS is usually characterised by reduced growth, feeding problems, hearing problems and speech and language difficulties. Limb abnormalities can also develop,
It is rare for children with CdLS to become adults who can live independent lives. They often need round-the-clock care for their entire lives.
Recalling the final leg of his journey into the Scottish capital, and into the arms of daughter Hasti, Chris said the Royal Mile was “just incredible”.
He said: “There were people lining the route, on the left side, the right side, hundreds of people which I didn’t expect at all, and the a piper started playing in the background and people started clapping.
“Hasti ran down the street towards me and I just fell to me keens.
“I had no more energy – I had nothing left to give. I had been running every day just to see her at the end.”
Chris added: “We had raised so much money. Far more than I had expected. We hoped to raise fifty grand, by the time finished we had raised £584,000.”
An emotional Ian Wright concluded the podcast, saying: “You’ve kind of got them there. You’ve been in the army and you can take all this, but give me that tissue”.
The fund-raising effort is continuing – Hope for Hasti at justgiving.com
The podcast is available here
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