A Cowie man is to kayak from Aberfoyle to Kincardine Bridge to fund a trip to America for a youngster with a rare genetic condition.
Del Craig, 30, is taking on the 55-mile journey on the water to try and send young Calum McPherson, from Bannockburn, stateside for a gathering of other families also dealing with the condition.
Calum has the CHAMP1 gene mutation – which causes severe speech difficulties.
He is the only patient in Scotland who has the rare condition.
The 15-year-old was diagnosed aged seven and requires one-to-one support in every aspect of his life. Calum’s main obstacle is communication. He is non–verbal and uses an iPad app called Proloqu2go for communication.
CHAMP1 is so rare that when Calum was initially diagnosed, there were only 42 diagnoses of the condition worldwide, with four across the UK and only one in Scotland.
Calum and his mum, Stacey, hope to be able to attend the CHAMP1 Research Foundation conference, the second edition of the event, in Florida this October.
The family attended the first ever conference, also in Florida, in 2019.
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The CHAMP1 Research Foundation was set up by one of the American CHAMP families.
The family need to raise funds to facilitate the trip.
Stacey’s cousin Del will take to the water in the hope it will raise around £1000 towards the trip.
An online fundraising page has been set up for Del’s adventure, on which Stacey said: “There are just over 100 people in the world diagnosed with CHAMP1. For Calum, having CHAMP1 means he has a severe speech impairment and will need one-to-one support for the rest of his life.
“Attending the conference will allow us to meet up with researchers over in America. Work is already underway to find out if there could be any potential therapies to improve our children’s lives.”
On the fundraising bid, Stacey added: “My cousin Del is doing a sponsored kayak for my boy. It will start on Saturday, July 9, over two days as it’s 55 miles.
“He will kayak from Aberfoyle to Kincardine Bridge. If we don’t meet the target for Florida then all funds would be donated to the CHAMP1 Research Foundation – www.champ1foundation.org.”
To donate to the fundraiser, click here.
