THREE years ago Zilah Grant lost her son Khian to a rare genetic disorder.

Now she has signed up for the Oxford Mail OX5 Run at Woodstock’s Blenheim Palace on Sunday, March 29 to ensure the Oxford Children’s Hospital’s important work continues.

Four-year-old Khian died on January 19, 2012 after being born at the John Radcliffe Hospital, with the rare condition Zellweger syndrome.

The disease, thought to affect one in 50,000, means the body doesn’t develop properly and in Khian’s case led to poor hearing, eyesight and mobility as well as seizures.

Zilah, 28, said: “I came across the OX5 and saw it was for the Oxford Children’s Hospital and thought I’d give it a go.

“It’s three years since Khian passed away and it’s a good time.

“He was under the care of a paediatrician and we were there quite regularly.

“He was cared for at Great Ormond Street as well but it was great to have a facility like the John Radcliffe so close.”

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The Grove mum, who works at Wantage Children’s Centre, is to raise funds for the staff who helped her and her family.

She said: “I’m doing it so all the other families can be treated in the way we were and raise money for the staff to continue to provide the care they do.

“It was a rare disease he had but they were always there for us to answer any questions we had.

“In particular the paediatrician Dr Robertson was amazing. Even after Khian passed away she was there for us.

“She was very good at her job and she told you how it was. We respected her a lot.”

When Zilah tackles the five-mile run she will be supported on the sidelines by partner Richard Chambers and their two children Marlei, 5, and Elara, one.

She said: “Khian enjoyed a lot of the sensory items, which would have been paid for with OX5 funds, as he had visual and hearing impairments.”

Children’s Hospital spokeswoman Sarah Vaccari said: “To come through such pain and want to do something positive to help others is truly inspiring.

“We are incredibly grateful to Zilah for running in memory of Khian in support of the Children’s Hospital.”

The event is sponsored by city recruitment firm Allen Associates for the seventh year running.

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