FOR Zilah Grant and her two-year-old son, Khian, every moment is precious.

Doctors have told Miss Grant that Khian will not live beyond his 20s, due to an extremely rare condition, Zellweger syndrome.

The disease, thought to affect just one in 50,000 people, means Khian’s body has not developed properly and, as a result, he suffers from poor hearing, eyesight and mobility, and experiences seizures.

In a bid to give Khian the best possible quality of life, Miss Grant, from Smiths Wharf, in Wantage, regularly takes her son for private physiotherapy and swimming.

And to raise money for the £40-a-time physio sessions, the family is holding a fundraising event in January where Khian will swim about 15 lengths of the children’s pool at the White Horse Leisure and Tennis Centre, in Abingdon.

Miss Grant, 23, who is a receptionist at Wantage Leisure Centre, said: “Khian has always had a love of the water, he has enjoyed having baths since he was born.

“When he was about six months old we took him swimming and he took to it so naturally.

“It’s almost as if he has an instinct for it with the way he moves in the water. My partner and I found he would get hyperactive, so swimming was a great way of using his energy.

“The physio has also really helped but it’s so expensive.”

A few days after Khian was born at Oxford’s John Radcliffe Hospital he failed the newborn hearing test. For months doctors were not sure what was wrong with him.

Following more tests, it was discovered he had Zellweger syndrome. In its most serious form the genetic condition, passed on when parents carrying the gene have a child, usually kills sufferers within their first 12 months.

Doctors have told Miss Grant and her partner, Rich Chambers, 28, that Khian is about mid-level on the spectrum.

The couple also have a three-month-old son, Marlei, who does not have the condition.

Miss Grant added: “When we were first told about Khian’s condition it was a shock, because I have three siblings and so does my partner and they’re unaffected. It’s just a really rare thing.

“I’m a believer in making the impossible possible. The doctors said Khian will be in a wheelchair and live until his 20s.

“He’s already doing things they said wouldn’t be possible and I think there’s no reason he can’t have a decent quality of life.”

For details of how to sponsor Khian’s swim, email Miss Grant at