While it is a time for celebration for his full-time carer and grandad Colin Nesbitt, it will be tinged with sadness as Colin has no idea how many more birthdays Reece will have.

Reece was diagnosed with acute lymphoblastic leukaemia a year ago and has spent more than 260 days since then in hospital.

Although they initially told Colin that Reece had a 93 per cent of survival, doctors later discovered he was suffering from the very rare Philadelphia chromosome.

He is the youngest child to have been diagnosed with this genetic abnormality, which makes the leukaemia impossible to cure.

"Once you are told your child has cancer, your world ends," says Colin, 47.

"Then you start to look at the odds and think he has a pretty good chance. You pump his body full of toxic chemotherapy drugs which knock him out. You sit holding his hand, waiting for days on end. Then on the day you are going home they tell you that his condition is incurable."

Reece is involved in a trial of imatinib, a highly dangerous cytotoxic drug which it is believed will slow the progress of the disease, but it has never been used on children as young as Reece.

It is difficult to administer, and Colin has the impossible task of forcing his beloved grandson to take the drug he hopes will prolong his life, three times a day.

"I have tried everything to get him to take it. It takes two hours to get some into him and we have to do that three times a day. It's heartbreaking but I have no choice."

For the 260-plus days that Reece has been in hospital, Colin has never been far from his side, sleeping in a makeshift bed by the little boy's bed. "I will never leave him," says the Bradford business adviser. "He needs me and I need him."

But staying by Reece's bedside at St James's Hospital in Leeds has not been easy.

Colin has had to watch the little boy suffer burns from radiotherapy, see his hair fall out and bile being pumped out of his stomach with a syringe as he screams in pain.

And when news came earlier this year that a bone marrow donor had been found for Reece, initial euphoria turned to horror.

To prepare Reece's body for the transplant, doctors had to ensure he was free from the leukaemia cells. To do this Reece would have to undergo eight blasts of radiation in five days. The side-effects are unimaginable.

"I was told he would be sterile, have brain damage, liver and kidney problems and growth abnormalities. I had to take the decision to destroy his future, but without it he did not have one; he would die," says Colin. "What would you do?"

Of course Colin signed. On April 18, Reece was well enough to have the bone marrow transplant and he was allowed home.

But after his transplant he caught a virus and was rushed back into hospital, where he then contracted the hospital bug C difficile and then another virus.

Because of the treatment and drugs he was on, Reece had no immune system and could not fight these bugs.

It got so bad that doctors said they had tried everything and there was nothing more they could do. But Colin was not ready to let Reece die. Colin pumped fluids into Reece and walked with him pinned to his chest for hour upon hour, splashing him with water and willing him to pull through.

Colin's determination paid off and Reece turned a corner. He was allowed home two weeks ago, only to contract shingles and be rushed back into hospital again. Colin was hopeful that Reece would be allowed out of hospital today for his birthday, but he is realistic. He realises that this constant battle against infection and illness is the future for Reece.

"My aim is to get him to his10th birthday, but I know that it unlikely," says the doting grandad.

While sitting for hour upon hour next to Reece as he battled for life, Colin was struck by the plight of the other children on the cancer ward and of their parents.

He met a little girl who had not spoken to anyone since coming into hospital.

"I pretended to bump my head and she smirked. I did it again and she laughed out loud. That made such a difference."

Colin decided there and then that he wanted to bring some happiness to the lives of these children. He came up with the idea of the Little Heroes charity. Unlike the bigger charities, which give money to research and hospital equipment, Colin wanted
his charity to make a difference immediately on an individual basis.

His idea is to raise enough money for every child under-going a bone marrow transplant to be given £50 of toys which will be theirs to keep when they go home. They will receive £50 of toys for the following three weeks.

"Can you imagine a child and parents going through the hours and hours of waiting after a bone marrow transplant? You cannot go out because of the risk of infection. Then some stranger comes in and gives your child some toys and promises that he will be back next week. It just makes a difference to know someone else understands what you are going through."

But to make his dream a reality Colin needed help. He spent his days and nights at the hospital and when he wasn't there he was trying to hold down his job.

Enter Billy Bingham. Billy was so moved by Colin and Reece's story at a networking event that he decided that he wanted to take an active role in making it happen.

"I believe in fate and believe Colin and I were supposed to meet that day. I have a little boy who is two and Reece's story just touched me," said Billy, who runs Shine Recruitment in Bradford.

They want to raise enough money to help pay the mortgages or rents of parents of children with leukaemia as many, like Colin, have to take unpaid leave to look after their child. They are also in the process of writing a book together for parents with children diagnosed with leukaemia. "We want it to be in parent-speak not medical-speak so they know the things they should and shouldn't do, especially when you get that child home and you are on your own."

A series of fund-raisers are planned, with the first gala launch event taking place on Saturday at the Hilton Hotel in Bradford. They already have the support of many sporting names and want to raise £10,000 before Christmas to ensure all children get their presents.

"We want this to be Reece's legacy," says Billy.

The charity gives Colin something to focus on, but his life is still at a standstill. He planned to get married in Australia this year, but everything is on hold.

"The only thing that matters is Reece. If we can bring a little bit of happiness to other children along the way that's a bonus," he says.

The gala charity event in aid of Little Heroes takes place at the Hilton Hotel, Bradford on Saturday. Tickets cost £50. For details, contact Billy Bingham on 07967 294168, email billy@
shinerc.co.uk or visit www.littleheroes.org.uk