Brave boy reads his own story of survival

Jaxon Skews and his mother, Michelle York, read the book written about him. Photo / Simon Baker

A boy who fought his way through rare life-threatening illnesses can look back on his brave struggle in a picture book in which he is the hero.

Jaxon Skews is now a healthy, bubbly 3-year-old. But only a couple of years ago he was gravely ill, and much of his life has been spent in hospitals and undergoing operations.

His story has been told in an illustrated children's book called Jaxon - he is the Star, the fundraising brainchild of family friend Joy Butel.

Jaxon has already become attached to his illustrated image in an advance copy.

"We were pretty emotional when we saw it. Jaxon thinks it's pretty cool that he's in the book," said Jaxon's mother, Michelle York.

Money raised from sales of the book will go to Ronald McDonald House, where Jaxon's parents spent much of their time while he was undergoing treatment at the Starship Hospital.

Ms York recalls vividly when Jaxon became very ill at 6 months old and her family had to be rushed from their hometown of Christchurch to Auckland.

"He was just getting sicker and sicker, to the point where one weekend he was so ill ... he was grey.

"Pretty much right from when he was born, from 2 weeks old, I knew something wasn't right. He seemed to be in pain a lot of the time."

Jaxon was eventually diagnosed with a rare condition called Chronic Granulomatous Disorder. The disease targets the immune system and leaves the body vulnerable to infection.

At the time, Jaxon was only the sixth child in New Zealand known to suffer from the condition.

A mass on Jaxon's liver, which his parents feared might be cancer, turned out to be the body storing infection that Jaxon was unable to fight. He was also suffering from a rare blood condition called McLeod Phenotype.

"Once we got the diagnosis, the drugs were put in place, and a plan was put in place, and we knew what we were dealing with. But until then it was pretty scary," Ms York said.

Half of Jaxon's liver and his gall bladder were removed. He also needed two bone marrow transplants.

Jaxon featured in the Herald in November 2006 when an international mission was mounted to save him by importing blood of a rare type.

During his treatment, Jaxon's parents were unable to work, so Ms Butel tried various fundraising efforts, before coming up with the idea for a book, which she funded.

She wanted to inspire other sick children, and to make a fun book "with a victory at the end".

* Jaxon - He is the Star, will be sold online at www.jaxon.co.nz.