12:18pm Wednesday 20th November 2002
By Joseph O Shea
In January, James Haddad was diagnosed with a very rare form of brain tumour called a "diffused intrinsic pontine glioma" a cancer which is located at the centre of the brain and cannot be safely removed or operated on.
One of the rarest types of cancer, a "diffused" tumour is particularly deadly because it grows outwards with branch-like tentacles.
James' father Robert told the Guardian: "Some brain tumours are operable and with radiotherapy, doctors can sometimes extend life by up to 20 years. Unfortunately with James' type, the diffused element and location makes it impossible to operate."
Located at the brain stem, where the body's nerves meet the brain, the tumour affected James' senses, causing double vision, poor balance and eventually loss of speech and movement.
Robert said: "James was a very clever boy and at one stage he heard the word cancer and told us that all people with cancer died. So we decided we didn't want the word used, as it would have killed his morale."
Therefore all James knew of his condition was that he was very ill and had a "nugget" in his head.
Robert said: "It definitely improved his quality of life and allowed him to remain a very happy boy right to the end."
After James' initial course of radiotherapy, the Haddads were told by doctors that nothing more could be done.
However, they undertook their own internet research and not only found support groups but also pioneering treatments available in the United States.
The James Haddad Appeal was set up to fund any trip abroad but James was eventually prescribed two different combinations of pioneering cancer drugs, not previously available in the UK.
With the aid of dietary supplements in 36 daily tablets, James bravely fought the condition for a further eight months, before dying in his parents' arms.
Robert said: "That James outlived most others with the same condition shows that the steps we took had a positive effect."
The appeal currently stands at over £45,000 and will now be used to fund research, treatment and education about James' condition.
Robert said: "We hope to fund a research centre which will fight this particular condition and make a difference to other sufferers in future."
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