Still a long road ahead (From Croydon Guardian)

Still a long road ahead

11:08am Wednesday 3rd July 2002 in News By Joseph O Shea

Although the James Haddad Appeal fund is in full swing, it is still well below the amount required to take James outside the UK for alternative treatment.

His parents have been advised by others in the same situation that the required funding exceeds £60,000.

The Haddad family have endured a living nightmare since their son was diagnosed with an incurable brain condition just after Christmas.

Few of us can imagine the ordeal they have to deal with on a daily basis and the desperate search for any treatment available to help cure their only son's crippling illness.

His father Robert said: "It's difficult to balance attending to James' every need with maintaining a semblance of normality that he wants in his daily routine."

James' diet has been completely over-hauled and he is not allowed to eat what he likes, such as sweets, chocolate spread or even soft drinks.

These restrictions bring occasional outbursts which are heart wrenching for Robert and Sue but they have to resist short-term solutions to James's cravings.

Sue said: "We have to find compensating activities to alter James's mindset when he becomes agitated."

James' irritation is understandable, because his regime requires he take high levels of medication, administered daily in over 30 tablets, but he is usually co-operative in taking them.

Though he tires quickly and has had to give up football, riding his bicycle and other outdoor activities, James is still able to attend St Mary's school and be with his friends. He looks and behaves like any child his age but supervision is always there.

James knows he is not well and is grateful to his family but like any boy his age, he wants to be left alone to make his own discoveries. Going to see his best friend Huss in North London is one of his favourite pastimes and a welcome break from his new lifestyle.

James said: "He treats me the same as he always treated me. He doesn't say don't do this or don't eat that, like my Mum and Dad. Even my sister stops nagging me when we visit Huss. I wish it could always be like this."

But even James's friends are aware new rules apply and seem to have an uncanny gift of being able to deliver the message effortlessly, without causing reaction.

For Robert and Sue, balancing the need to let James enjoy his childhood with the medical requirements of his condition is a testing experience but one they will go through willingly to see him recover.