Mum and dad running up funds for hospital as thanks for son's care

Tom and Clare Law, from St Annes, are taking part in National Elf Service, a festive fundraiser which sees charity supporters don their Christmas jumpers and other seasonal gear to tackle challenges to raise much-needed funds for Sheffield Children’s Hospital.

The couple were inspired to take part after their six-year-old son Austin was cared for at the hospital after being diagnosed with a rare genetic disorder called cystinuria in July 2018.

Cystine is an amino acid which makes up proteins in the body. While most people’s kidneys break down the acids and reabsorb them into the body, people with cystinuria are unable to do that and develop kidney stones.

Most people with cystinuria get stones in their 20s and 30s, but Austin was just four when he was diagnosed, after a stone almost filled an entire kidney.

Mum Clare said: “We knew he had kidney stones following scans at our BlackpoolVictoria but had no idea why and had never heard of this condition.

“We were glad they had found why he was poorly regularly as we knew something wasn’t quite right. But as the condition is so rare in children, there wasn’t lots of information out there.

“We weren’t sure about the treatment he would need and if he would make a full recovery. That’s when we were referred to Sheffield Children’s.”

In May 2019, Austin had major surgery to remove the stone, which lasted approximately five hours. The damage from the stone has limited his kidney function to 20 per cent, although it is hoped that will improve as he grows.

Austin, a pupil at Lytham CE Primary School, now needs to take medication twice a day and to drink between two and three litres of water to prevent more stones forming.

To say thank you, Clare, 38, and Tom, 39, have been running 150km between them from December 1 to today, Christmas Eve, for the Elf Service campaign.

They set a target of £1,000 but exceeded that a week ago.

They have been going our running separately every day but hope to do it together for the final day, with elder son Finlay, 10, along for support.

Clare added: “We know that with so many fundraising events being cancelled, it’s been a very challenging time for the charity, so we wanted to help in any way we could. Neither of us are regular runners so it’s a big deal for us.

“We have been sharing it out between us, running just over 6km a day to make sure we don’t have to run a marathon on Christmas Eve.

“We know how difficult things are for people at the moment, so we originally set our target at £150. However our friends, family, colleagues and the local community have been incredible and donations have been flying in!

“We thought if we could get to £1,000 we’d really feel like we’ve been able to say a proper thank you to all the incredible staff, but we’ve topped that and thanks to everyone who has contributed.”

Professor Prasad P. Godbole, Consultant Paediatric Urologist and Deputy Medical Director at Sheffield Children’s added: “Thanks to Austin’s parents for the great work they are doing.”

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