A NINE-year-old boy who can’t play in a playground because of a rare immune disorder needs a bone marrow donor to give him a normal life.
Alex Hannard wants to be an actor, an inventor and a geneticist when he grows up – but at the moment the smiley youngster isn’t able to enjoy things other children take for granted.
He suffers from CGD, chronic granulomatous disorder, and is at constant risk of coming into contact with potentially fatal infections or funguses.
This means he has to avoid many common natural features – such as tree bark, freshly cut grass, brick dust and even autumn leaves – at all times.
He missed almost half the last school year and spends most days inside with his mum Louise, but longs to get out and explore the world.
‘I want to join Cubs and go camping,’ said Alex. ‘But I can’t really go anywhere damp, because I might catch something.
‘Mostly I like to watch films and play computer games, and I have a best friend who looks after me and keeps me safe, but I wish I could do what everyone else does.’
Now in a bid to give their son a normal life Alex’s parents have teamed up with the charity Anthony Nolan to find a donor for blood stem cells - present in bone marrow - which could cure him.
But after recently finding a compatible subject and preparing to enter hospital the family’s chance was cruelly snatched away when Alex caught an infection.
Now they are desperate to find a new donor and are urging people to come forward and be tested.
Alex said: ‘I’m sort of glad we didn’t go to hospital before, because I got to go to the premier of the last Harry Potter film and met Hedwig.
‘But now I hope we find someone and I can get better.’
Since being diagnosed in 2007 Alex has been treated many times at Great Ormond Street Hospital in London, but it’s only recently that a permanent cure to his condition has been found.
His mum Louise, 40, of Boyd Close, Hill Head, said when the doctor asked if he wanted the new treatment, Alex told him: ‘I don’t want to be different any more.’
‘He is so brave and positive but he does get very upset about it,’ she said. ‘We have to protect him all the time.
‘I’ve had to stop working and every sneeze or cough is heart-stopping. I would give anything for him to be able to do all the things other children can do, instead of being limited by his illness.’
The charity will be present at the Shepherd’s Wharf Marina as part of Cowes Week to register new potential donors from 10am to 7.30pm today, and from 10am to 3pm tomorrow.
A home testing kit can also be ordered from Anthony Nolan by visiting anthonynolan.org or calling 0303 303 0303.