Dad to run personalised marathon to raise money for Great Ormond Street, the hospital which saved his son’s life

A grateful dad will run his own marathon route in the sweltering heat on Saturday to raise money for the hospital which saved his son’s life.

Paul Clark has mapped out his own 26-mile course from Great Ormond Street Hospital (GOSH) out of gratitude to medics there – and the friend who suggested a diagnosis of Eddie’s rare condition.

He will pass through the Lambeth and Croydon streets, where he and his wife Nikki were raised, to their home in Nutfield, near Redhill, to raise cash for Hunter Syndrome – it means the body has difficulty breaking down sugars, slows speech and reactions, and afflicts only 2,000 sufferers worldwide.

The money will go to the MPS Society, which supports families with a similar range of conditions.

Eddie, now aged four, was diagnosed in March with the extremely rare and incurable condition.

He has undergone several procedures at GOSH and now has a weekly infusion of the vital enzyme that he is missing.

Paul said: “You feel really helpless as a parent when this happens, so raising money for the MPS Society was one way of trying to give something back.

“They have held our hands throughout and reassured us we are not alone.”

In just a few weeks the family has raised £4,000 through a JustGiving page – with a great deal of support from followers of Crystal Palace Football Club, which Paul’s family has supported for generations.

They have even had a donation from ex-player and TV pundit Mark Bright.

Financial adviser and former painter and decorator Paul said: “We were really pleased Palace got involved.

“When I started going there were only 6,000 fans in the ground – my dad used to go regularly – but now we are at our peak.

“Eddie has been a very brave boy and has inspired me to raise funds for the MPS Society, a charity that is supporting us and around 1,500 other families in the UK dealing with an MPS condition.

“I am up to 22 miles with my training. I will start at 7am so I can do most of it before midday.

“Being able to train has been one blessing of lockdown. But it has been an awful time for everyone – my wife lost her mum in the MayDay Hospital and we could not even see her when she was ill.

“So this is a way of trying to do something in this situation.”

He also thanked the friend who suggested Eddie might have Hunters Syndrome.

“It took a lot of courage to say because it is a serious condition,” said Paul.

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Pictured top: Paul and Eddie with mum Nikki and sisters Bonnie, six, and Tilly, seven