Fight for brave Kyran
Family of six moves to Melbourne for lifesaving surgery
bright, curious Tasmanian schoolboy who has endured seven years of a chronic disease repeatedly attacking his liver, leading to countless hospital visits and 15 operations to drain fluid from his abscessed organ, requires chemotherapy and a bone-marrow transplant.
Kyran Cook-Wright, 12, was diagnosed at the age of five with rare condition chronic granulomatous disease (CGD), transforming his life, mum Demi Cook told the Mercury.
CGD occurs when a type of white blood cell, called a phagocyte, doesn’t work properly, leading to recurring infections. In Kyran’s case, CGD has attacked his liver repeatedly, leading to 15 operations and a disrupted life.
The disease is curable but first Kyran – a “fighter (who’s) always smiling throughout everything”, according to his mum – must undergo a round of intensive chemo to “wipe” his immune system before undergoing a bone-marrow transplant at the Royal Melbourne Hospital.
“It’s quite intense. He’ll spend 100 days in hospital. He won’t be able to see his (two) brothers and sister, and can only have two bedside visitors,” Ms Cook said.
“We’re going to be broken up as a family.”
He will have a port inserted on May 15 before undergoing the transplant in late May.
Kyran, from Clarendon Vale, has been asking lots of questions about what will happen to him.
“He’s suffered with a lot of anxiety, he can get angry and frustrated, but he’s very, very used to it (after all this time). He just travels along with it,” Ms Cook said.
“He has a good understanding of what he is about to go through.”
Ms Cook said she, partner Mark and her three other children have had to uproot their lives in Clarendon Vale to relocate to Melbourne, where they will need to live for six to 12 months while Kyran recovers.
They are living in North Melbourne’s Bone Marrow Donor Institute Rotary House while counting down the days until Kyran has his surgery.
“I’m as good as I can be,” Ms Cook said.
“I have to be strong for all the kids.
“Some days I do cry. It’s an emotional rollercoaster, especially having to pack and move away from family to Melbourne, where we have no-one.”
The family is currently living on government payments – Ms Cook, the family’s breadwinner, was forced to quit her job as a cleaner when it beA
came apparent Kyran’s operation was finally on the cusp.
An online fundraiser seeking to help the family survive has raised almost $4000 at the time of writing.
And while Kyran’s transplant after all these years is the answer to this family’s prayers, there is a time bomb waiting explode at some point on the road ahead.
CGD is inherited, and while Kyran’s youngest brother, Karter, doesn’t have the gene, and sister Kaycee has it but it’s dormant, Keegan also lives with CGD.
“With Keegan, we’re definitely going to have to (do it all over again),” Ms Cook said.