Just like his favourite colleagues Iron Man, Spider-Man and Batman, Alex is a brave one-in-a-million anomaly who differs from the rest of society.
He is the only person in WA with chronic granulomatous disease. The disease is his kryptonite ” it is a rare genetic condition that affects his immune system and prevents him from efficiently breaking down bacteria and flushing it from his system.
He was diagnosed with the rare disease in April last year and since then mother Shelley and father Rob have taken him to the hospital about 150 times.
The disease can be cured but only if Alex can find a suitable bone marrow donor, which his dad Rob says would be like winning the lottery.
He said the last attempt for stem cell treatment was unsuccessful and the search for a suitable bone marrow donor had so far been futile.
‘In November we went into Princess Margaret Hospital for a stem cell transplant that unfortunately failed and medical staff couldn’t say why. The old marrow with the disease went back into his body and the disease is getting more aggressive,’ Rob said.
‘Doctors recently advised us we need to learn to live with this disease until we can find a suitable donor.’
Living with CGD means Alex will continue his doses of daily medication to prevent infection and going to hospital if infection strikes. There is a 90 per cent survival rate for people with CGD who get bone marrow transplants from a suitable donor.
Rob, who says he has quickly had to become an expert on CGD, said there was a shortfall in bone marrow donors worldwide.
The quest to save Alex has led Rob to organise a bone marrow donor drive, with a goal to educate and ask suitable donors to register on the day.
‘It is a gamble and if we can’t find a suitable donor to save Alex’s life, then it will save someone else’s life,’ he said.
‘At the end of the day, it will help someone else from having to walk in our shoes.’
Representatives from the Australian Bone Marrow Donor Registry and a local Ellenbrook bone marrow recipient will speak at the information session.
They will be at 33 Comserve Loop, Ellenbrook, from noon to 4pm on October 26.