A tragic twist of fate has left Sarah Wilson desperate to enjoy every second she has with daughter Ella.

Little Ella Hudson has a rare genetic disorder that will eventually shut-down her brain and take her life.

And it is because her parents Sarah and Paul both share a genetic weakness that their 18-month-old daughter has inherited the fatal illness.

Her parents have been told Ella is unlikely to live into her second year because she suffers from Krabbe's disease - a condition so rare you are more likely to win the lottery than be born with it.

Today mum Sarah, 30, said: "All I ever wanted was a little girl, she's beautiful and perfect in every other way.

"We've been told babies with this condition don't normally live into their second year so it's my aim to make things comfortable for her and enjoy the time we have."

During the first 18 weeks of her life Ella developed like any other child, smiling, gurgling and reaching for her toys.

But by November she was crying in pain through the day and night and lost co-ordination in her limbs. Over Christmas Ella was hospitalised after she contracted a meningoccocal infection, a form of meningitis.

Then in January, Sarah and her partner Paul Hudson, 32, of Brookfield View, Cleckheaton, were told their daughter had Krabbes disease - a rare condition inherited from them.

Sarah, a former landlady of the Walker's Arms pub in Scholes, Cleckheaton, said she and her partner had "been close to suicide" after being told of their daughter's tragedy.

But the couple sought solace after hearing of the Martin House Hospice for Children in Wetherby.

She now, together with her mother Cathy Hughes, landlady of the Bull's Head pub in Westgate, Cleckheaton, is planning a fundraising day on Easter Monday for the hospice where Ella may spend her final days.

Krabbes disease, a form of leukodystrophy,crrt weakens the immune system and means Ella could end her life paralysed, blind and deaf.

Only about 20 infants have the condition in Britain at any one time.

Sarah, who has a son, Alexander, four, from a previous marriage, said hospice staff had given her the strength to keep going.

She said: "I'd never heard of Martin House and I didn't want Ella to go there. I knew she didn't have long and I felt it was my job to care for her.

"I was devastated to have given in and when we got there we sat on the bed and cried.

"They put her on a course of drugs and the next day she was a different baby."

She added: "The chances of getting Krabbes disease are less likely than winning the lottery but both me and Paul carry the weak gene.

"We're so grateful for the help the staff have already given us so we want to do all we can for them."

Her mother Cathy said: "Sarah was physically and mentally drained and we didn't know what to do to help.

"The hospice has taken 80 per cent of the pressure off Sarah and Paul because they know they have somewhere to go.

"It's a really close community in Cleckheaton and people really wanted to do something for Ella.

"The charity day at the pub was their idea."

The event is expected to include a three-legged race around Cleckheaton and an auction of goods donated by local companies and sports team.

Anyone who can help should contact the Bulls Head on (01274) 871772.

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