Family hopeful for cure for baby with rare disease

Charlie, who is one, has a rare degenerative disease called PolG mitochondrial disorder

A father has raised more than £35,000 to fund research into a rare degenerative disease in the three weeks since his one-year-old son's diagnosis.

Harrison Dodds, 28, signed up to run the Yorkshire Marathon with nine of his friends, days after his son Charlie was diagnosed with PolG mitochondrial disorder.

Mr Dodds, his wife Ellie and their two sons had spent a week's holiday in Greece but when they returned home they fell ill with flu.

Charlie began experiencing myoclonic jerks and was taken to Hull Royal Infirmary, before spending eight days in an induced coma at Leeds General Infirmary while his diagnosis was confirmed.

"He was transferred to Leeds General Infirmary's intensive care unit on the Thursday, and then he remained in a medically induced coma for eight days while they tried to understand exactly what was going on," said Mr Dodds.

"As we were leaving, we got pulled into a room and told that we've got results back on one more test, and it appears Charlie's got a rare mitochondrial condition called PolG and there's no effective treatment and it's incurable.

"Over time the symptoms will take hold on his body and cause the regression."

Five days later Mr Dodds, who works in construction management and competes in Hyrox contests, decided to begin a fundraising challenge.

Charlie's dad Harrison Dodds has raised more than £35,000 to fund research

He said: "I was texting a friend who is in London. He's doing an ultra-marathon in Slovenia next month and we started to say, 'let's try and do a bit of fundraising. Let's do a bit of a run.

"By 20:00 we had the fundraising page set up and we agreed £2,000 each.

"We shared the page, it went live and went to bed, woke up the next morning and to our surprise, we'd already surpassed the £4,000 mark within 12 hours.

"And then it was almost as though the floodgates opened in terms of generosity and support, because we got to 48 hours later and we broke the £25,000 mark.

"Seven days on we surpassed the £33,000 mark."

The family, from Driffield, are hoping the money will fund research to find a cure and effective treatment for the condition.

Meanwhile, they are meeting with experts from across the globe to find a way to help Charlie.

"We're speaking to professors in Helsinki, in Norway, in Australia, in Canada, Switzerland, United States," Mr Dodds said.

"And we have had extremely good support, but it has also confirmed how the condition is so rare.

"A lot of science is dedicated to more common diseases.

"We're reassured there is some extensive research going on across the world and we're not too far away from effective treatment and supposedly a cure."

Money raised from the marathon, taking place in York on 19 October, will go to The PolG Foundation, an American organisation that funds research and supports families.

"At the moment Charlie is happy," said Mr Dodds.

"He's smiling. He appears pain-free.

"He's still very much the Charlie that he was before 9 July.

"We're taking it one day at a time and focusing on the here and now, and enjoying the moment with it."

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