A NOTTS boy is the first child in the UK to test a pioneering treatment for people with leukaemia.
The drug, Dasatinib, could reduce the need for young leukaemia patients to have bone marrow transplants.
Eleven-year-old James Morley (pictured) has a rare form of leukaemia, and is the first child in the UK to test the new drug out. James's mother Pam said: "Fingers crossed, up to now the drug is actually working."
James, of Sutton-in Ashfield, said: "It has really changed my life I feel proud helping other people."
James' diagnosis finally came after he started to see red wherever he looked.After years of mystery illnesses, the 11-year-old's parents took him to see an optician, who could see blood cells bursting in his eyes.
James, of Tudor Road, Sutton-in-Ashfield, was rushed to King's Mill Hospital and then to the Queen's Medical Centre.
He was diagnosed with Philadelphia positive acute lymphoblastic leukaemia, a rare illness in children.
Mum Pam said: "We noticed he was a bit tired. His temperature kept spiking but they couldn't find anything wrong with him.
"We kept taking him, we knew something was wrong but they just weren't sure."
But then James's condition worsened.
Pam said: "He started seeing white as red."
After being sent to the Queen's Medical Centre, James was diagnosed a week later and began treatment almost immediately.
"When the consultant told us everything, it just flew over our heads," Pam said.
She said the months since James's diagnosis in April last year had been very difficult.
"The first year of the illness is going to be the worst – at a second's notice you could be taking him back to hospital.
"We're used to it; it's like a day-to-day experience. It was a shock at the start. But you've got to get a grip on life and carry on – you have to pull yourself together.
"It's like a rollercoaster. You don't know when you are getting off or where you are going."
The diagnosis came at the same time that the drug Dasatinib became available for trial on children immediately after diagnosis. It is currently available to adults only after other treatments have failed.
Even though James was the first child in the country to take it, his parents don't spend much time worrying about the drug.
Pam said: "At the moment we don't think about it, we just go from day to day – we don't plan.
"Basically, with the drug, we don't know much. You don't think of the survival rate, it's just a number. You keep going. It's a rare thing for children, it's a case of don't think about it and fight it."
As well as the drug trial, James has to continue with regular chemotherapy.
The youngster, who loves art and drawing, said: "None of us ever really saw it coming."
Emma Astwood is the paediatric haemotology consultant at Nottingham Children's Hospital.
She said: "Acute lymphoblastic leukaemia is the most common type of leukaemia, but Philadelphia positive only accounts for three to five per cent of child cases.
"It means the leukaemia is more difficult to treat than normal."
In recent years, a drug called Gleevec has emerged and has improved the prognosis of children suffering with the condition.
Dr Astwood said: "A lot of kids still needed transplants, but it did improve it."
Dasatinib is a more potent version of Gleevec and it is hoped that it could have a major impact on the disease.
"It's a study, so we don't know for definite, but trials suggest it seems beneficial," Dr Astwood said.
Without the drugs, the prognosis for sufferers can be worrying.
Dr Astwood said: "It can kill them. It's difficult to know, but previously the prognosis was about 40-50 per cent survival.
"Ideally, it will take away the need for a bone marrow transplant from children with Philadelphia positive acute lymphoblastic leukaemia."
A bone marrow transplant replaces damaged bone marrow with healthy bone marrow stem cells.
But transplants are complicated and have significant risks. In some cases, the transplanted cells recognise the recipient's cells as foreign and try to attack them.
The risk of infection is also increased because the immune system is weakened by intensive chemotherapy which prepares the body for the transplant.
