9:36am Wednesday 2nd October 2002
James Haddad's parents Robert and Sue have asked the Guardian to publish this statement on their nine-year-old son's progress and the fundraising appeal:
It has been nine months since James was diagnosed with a life-threatening and extremely rare brain condition and our son's health is now in rapid decline.
After an initial six weeks of radiotherapy and extensive drug treatment, we were told by NHS consultants in February that nothing more could be done.
We could not accept this and undertook pain-staking research to find a cure for James, which proved so beneficial that we managed to have him treated with a pioneering drug not normally prescribed to children in the UK.
The drug initially thwarted the tumour's growth, offering us hope and allowing James a normal childhood routine, albeit with a strict dietary regime.
But in mid-August James eventually went full circle and began to suffer his original symptoms.
This setback increased the likelihood that we would need to take James to America for state-of-the-art treatment, which could only be paid for through extensive fund-raising, which has engaged family friends and strangers touched by James's plight.
In recent weeks, James has shown signs of even greater deterioration to the point where he can no longer talk and his movement is severely limited.
However, one of our NHS consultants introduced us to a leading Canadian oncologist based in the UK, who agreed to treat James with a new combination of drugs previously only available in Boston, USA.
James has started this pioneering medical treatment and we desperately pray it will improve his condition.
We are conscious that so many of you have made huge efforts and shown remarkable generosity to support the appeal and we cannot thank you enough.
But we felt we should inform everyone that treatment abroad has, at this time, been postponed, while we anxiously await the results of the new medication. We hope the treatment is not too late.
We are committed to using every penny raised to find a cure for James but if these funds are not destined for his recovery, they will be used to help other children suffering from a similar illness and charitable organisations associated with James' condition. So once the current programme of events has been completed, we would like the fundraisers to take a well-earned break, pending the results of this latest course of treatment.
Many thanks and God bless you all, Robert and Sue Haddad.
l The break in fundraising will begin after Croydon Fire Brigade's rowing marathon in the Whitgift Centre on October 10 but the Guardian will continue to provide updates on James' condition.
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