Dad raises cash for daughter’s disease research

Four-year-old Morven Hutchison, who suffers from cystinosis, with dad Neil. Picture: Ian Rutherford
Four-year-old Morven Hutchison, who suffers from cystinosis, with dad Neil. Picture: Ian Rutherford
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SHE looks like any other mischievous four-year-old – full of smiles, fun and laughter.

But Morven Hutchison is one of only 12 people in Scotland to have cystinosis, a genetic disease which attacks the organs, particularly the kidneys.

Diagnosed as a baby, her life revolves around medicine, with her parents all too aware that come adulthood she will need an organ transplant.

Determined to raise awareness and money for research, her father, Neil, 34, is setting off from Edinburgh on a 1150-mile, 12-day cycle trek across Britain and Ireland – backed by an army of supporters.

He said: “I’ve been completely taken aback by how generous people and companies have been in giving us their services.”

Mr Hutchison, head of operational risk at Edinburgh investment management company Martin Currie, will leave on Monday with nine friends, neighbours and relatives. They will pass through London, Cardiff, Dublin and Belfast before returning, already having raised more than £34,000 in sponsorship for Cystinosis Foundation UK, of which Mr Hutchison is a trustee.

The fundraiser has also been given a boost from food manufacturer Halls, which has paid for most of the meals the cyclists will consume, as well as Holiday Inn, which has provided rooms along the route.

Morven was nine months old when doctors discovered she had cystinosis. She takes three different medicines at regular intervals every day, including in the middle of the night. Patients taking these drugs often suffer vomiting and low appetite, meaning they get tired and prone to infection.

Mr Hutchison said: “The medicines are very, very crude and it’s a cast-iron certainty that she will need a kidney transplant. It’s all about prolonging the time until that day.”

The proud father described Morven as a regular “girly girl” who goes to nursery and enjoys drawing, crafts and baking. Her biggest obsession is the hit Disney film Frozen.

He said: “You can’t wrap her in cotton wool. She’s certainly not in a bubble, she gets on with things.”

Mr Hutchison’s training has been interrupted by chest infections and a job change. He also only began cycling regularly 18 months ago, and until last summer the longest distance he had covered was 40 miles. But he is confident he is ready for the 100-mile-a-day odyssey, with two ferry journeys between Ireland and Great Britain as the only rest breaks.

At least one group member has experience of touring, with Neil’s brother Grant – the drummer in Scottish indie band Frightened Rabbit – also taking to the saddle. Another brother and band member, Scott, will drive one of the support vehicles.

Mr Hutchison said: “Frightened Rabbit have been amazing, they’re always auctioning signed drumskins or sketches. They charge a fiver for the guest list on the door that goes to the charity.”

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