1 IN 6 BILLION; TOT WAS ONLY ONE IN WORLD WITH ILLNESS.

Byline: LESLEY ROBERTS

LITTLE Leighton Readie was a child in six billion - the world's only sufferer from a complex genetic illness.

For the 16 weeks of his life, he fought the harrowing effects of his condition that would normally claim a baby's life while still in the womb.

And when he finally lost his battle for life, his parents - Avril and Robert - knew they had to do something to remember their little miracle.

The couple, of Duntocher, near Glasgow, have now helped set up a UK support group for families of other children affected by Fanconi anaemia.

Primary teacher Avril, 29, explained: "When Leighton was born, the doctors at the Sick Kids' hospital in Glasgow were baffled. There were so many things wrong.

Transplant "He was eventually diagnosed by a team at Guy's Hospital in London who told us he had a very rare form of Fanconi anaemia.

"Children can live with some types of Fanconi but Leighton was type B and there were only five cases of this in history.

"No one could believe he'd actually survived pregnancy. We called him our wee miracle."

Fanconi anaemia is an inherited blood disorder which causes leukaemia in children, leaving them in desperate need of a bone marrow transplant.

Often, their best hope is treatment using the umbilical cord of a baby brother or sister who is unaffected by the illness.

The anguish of one Fanconi family inspired the recent movie, My Sister's Keeper, starring Cameron Diaz and Jason Patric.

Leighton already had a healthy older brother - three-year-old Robbie - but Avril and Robert never got the chance to see if he was a match for the newborn as the tot was too ill.

He was born with no lower arms, his oesophagus was missing, he had a hole in his heart and one kidney was on top of the other.

Avril said: "They thought he might have been blind too but my son could see me. I know that."

It was only when tests proved he had Fanconi anaemia that it become clear Leighton's problems were caused by an inherited gene.

Avril said: "It turned out I was the carrier. I was devastated. You can't imagine the guilt.

"We were told there was a one in four chance of any child we had being born with the condition. Girls are carriers while boys develop the symptoms so it was incredible that Robbie had been completely unaffected."

Every night, Avril and Robert trawled the internet looking for information on Fanconi.

They eventually got in touch with Bob Dalgleish, originally of Edinburgh, who had a daughter with Fanconi.

Avril said: "He was trying to start a Fanconi charity. A group of our friends had already started raising money in Leighton's name so we were able to donate pounds 5000 and it got things off the ground."

Tragic Leighton died in April last year and just five months later Avril discovered she was pregnant again.

After nerve-wracking checks, doctors gave the family the best news possible - it was a girl so she would not have Fanconi.

Baby Tia was born healthy nearly five months ago.

Avril said: "Tia isn't a replacement for Leighton. In my heart, I will always be a mum-of-three.

"But it is lovely to have two healthy children.

"Tia will be tested when she's a little older to see if she has the Fanconi gene. She will never have to go through what we have because we will make sure she knows all about it ." Meantime, Leighton's memory lives on in the fundraising and awareness campaign his friends and family work on tirelessly.

The charity - Fanconi Hope - were launched last year and have their own website, an army of dedicated supporters and network of medical specialists.

Two weeks ago Robert, a painter and decorator, and two friends climbed Ben Nevis, Scafell Pike and Mount Snowdon within 24 hours and raised pounds 5000.

He said: "It was tough but it was in such a good cause."

For more information or advice see www.fanconi.org.uk [e-mail]

CAPTION(S):

Devoted: Avril and Robert with newborn baby Leighton Support group: Robert and Avril, with baby Tia and Robbie, have launched a charity to help other children like Leighton, inset