Courage of an 11-year-old's battle for life

Leukaemia girl: Family allowed to sell story to pay for treatment after judge overturns restrictions on naming of Child B

REBECCA FOWLER

The courageous battle of Jaymee Bowen, the 11-year-old girl known as Child B, who was denied treatment for leukaemia by her local health authority, unfolded for the first time yesterday as her father attempted to raise further money for her treatment.

David Bowen won permission to reveal his daughter's identity and her struggle against the illness from three Court of Appeal judges. They reluctantly lifted a court order banning the media from naming her earlier this year so she could sell her story to the press.

When it was revealed that Jaymee had been refused further treatment for a fatal form of leukaemia in March, she became known to the world as Child B. Her case prompted outrage over how the medical profession decided when to stop treating patients.

Sir Thomas Bingham, Master of the Rolls, who presided over the case yesterday, said: "I greatly regret the necessity to exploit the medical problems of this child for purposes of financial gain."

However, he recognised that a pounds 23,000 deal with the Daily Mirror could prove vital to Jaymee, who is currently in remission. "I don't think the maintenance of reporting restrictions can be justified if the consequence were the denial of treatment which might be therapeutic and life-saving," he said.

Jaymee was refused further treatment for her illness earlier this year by Cambridge and Huntingdon Health Authority. The Bowens were told the pounds 75,000 cost would not be justified, as her chances of survival were so slim.

The decision followed a five-year struggle by Jaymee to overcome the illness. She was first diagnosed as suffering from cancer in 1990. After an intensive course of chemotherapy at Addenbrooke's Hospital, Cambridge, she was thought to be clear of the disease.

But in December 1993 Jaymee was found to have acute myeloid leukaemia. The following year Charlotte, her sister, acted as a donor in a life-saving bone barrow transplant at the Royal Marsden Hospital, west London.

As a celebratory Christmas trip Jaymee travelled to Disneyland in the United States with her father and sister in 1994. However, the Bowens were devastated at the beginning of this year when a routine blood test showed that the leukaemia had returned.

Jaymee prepared to resume her tenacious fight against the disease, but Cambridge Health Authority refused to provide further chemotherapy and a second bone marrow transplant. Doctors justified their decision by saying that she had only a 2.5 per cent chance of survival.

When Jaymee appealed a High Court judge ruled that the authority's decision "assaulted her fundamental right to life", and she should be treated. But the authority appealed against the decision, and on the same day the Court of Appeal overturned it.

The outcry surrounding the plight of Child B, as she was named, prompted an anonymous donor to give Jaymee pounds 75,000 towards her treatment, and she was admitted to the private Portland Hospital in London in March.

Dr Peter Gravett, the consultant in charge of her treatment, declared Jaymee clear of leukaemia in the summer, although he warned the remission was likely to be short-lived, and she still had only a 10 per cent chance of complete recovery.

But in August Jaymee celebrated her 11th birthday, lifting her survival chances to between 20 per cent and 30 per cent. Her fight had proved so successful, the National Health Service agreed to fund part of her care again.

Mr Bowen, who is determined to raise the rest of the money needed from interviews and donors, praised his daughter's spirit.

"If there was ever a child who scored well on what she's gone through and what she's done, her response to drugs, and her zest and appetite for life, this is the child," he said.

The NHS decision to suspend funding of her treatment earlier this year was widely condemned. Alf Morris, Labour MP for Wythenshawe, accused officials of "folly" and "inhumanity" in trying to play God.

"This child's story is the sharpest possible condemnation of allowing money to decide who lives and who dies," he said. "She was left waiting to die by official decision. But for her father's determination to fight for her life, she would now be dead."

The decision not to treat Jaymee was defended yesterday by Stephen Thornton, chief executive of the Cambridge and Huntingdon Healthy Authority.

"We took a great deal of medical advice on this particular case," he said. "All of the doctors concerned with her treatment were in agreement and in that sense all supported the decision we took ... People who live in our area need not fear. They will get the treatment that they need for any particular condition they have."

Fight for treatment

September 1990: Jaymee, aged six, is diagnosed as having a form of lymph gland cancer known as Hodgkin's disease.

August 1992: After intensive chemotherapy at Addenbrooke's Hospital, Cambridge, the disease is pronounced cleared.

December 1993: Acute myeloid leukaemia diagnosed.

March 1994: Jaymee has bone marrow transplant, with sister Charlotte as donor.

January 1995: Routine blood test shows leukaemia has developed again. Doctors give her six to eight weeks to live.

27 February 1995: Cambridge Health Authority refuses further treatment, saying it is unfair to Jaymee when she has only 2.5 per cent chance of recovery.

10 March 1995: High Court judge rules that health authority refusal to pay for further treatment "assaulted her fundamental right to life". Authority appeals and Court of Appeal overturns decision.

13 March 1995: Jaymee is admitted to a private hospital after an anonymous donor provides pounds 75,000 for treatment.

14 May 1995: Jaymee pronounced clear of disease but specialist says remission is likely to be short term.

August 1995: Still in remission, survival prospects said to be up from 10 per cent to 20-30 per cent.

24 September 1995: It is announced that part of Jaymee's care is now being funded by the NHS.