HE has already beaten the odds by defying death for 12 long months since suffering severe brain damage and blindness from bacterial meningitis, but the next year is just as critical for young Max McIntyre.
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Max’s story has brought out the best in people across western NSW as his parents Amy and Rob and friends such as Bathurst’s Paul Twohill have harnessed the power of social media in a fundraising campaign they hope will save and improve the quality of his life.
Rob and Amy are fighting on two fronts.
The fundraising challenge is daunting – they need at least $100,000 for stem cell treatment to help improve Max’s quality of life. But at least that is clear cut.
On the other battle front, the couple is desperately trying to find out if this treatment can even be performed and if anyone, anywhere, will do it for them.
Where do you even start to research this information? Google? Asking doctors? Trying to contact researchers?
They soon discovered no one performs the surgery in Australia and have tentatively narrowed it down to London, Philadelphia and Toronto but the complications and hurdles involved with such a procedure are daunting.
For a start, there is no guarantee that stem cell treatment will be successful, but it’s their last option.
They would probably need to source an umbilical cord from a donor service as they didn’t keep Max’s cord at birth.
And even the logistics of transporting the cord overseas are unknown. The solution may be simple but where do you find the answers?
Back to Max.
This time last year he was a normal, healthy nine-month-old boy. Then, on a stopover in Canberra on a road trip, Rob and Amy noticed he wasn’t himself.
“He had a temperature but we didn’t think it was much more than that,” said Rob, who was about to fly out to Melbourne to meet some mates, including Paul Twohill, while Amy and Max drove on to visit friends in Wagga Wagga.
Rob had no idea as he waved goodbye to his wife and son that life would never be the same. Over the next few hours Max’s condition worsened.
“We think he had a stroke and he was flown to Randwick Children’s Hospital where he spent 10 days in Intensive Care,” said Rob, who rushed back from Melbourne on the next available flight.
Bacterial meningitis is rare in a child nine months of age and doctors don’t know why it struck Max or how his condition will progress, but they didn’t pull any punches with the McIntyres, telling them he had a few days only to live.
“The doctors don’t allow you any false hope,” Rob says.
“They give the worst case scenario right from the start so we didn’t really expect him to live very long.”
The suddenness of the situation was brutal.
On Thursday, Amy was like any other proud young mother on maternity leave, content and happy as she enjoyed the attention her pride and joy received from colleagues during a visit to her workplace at the Daily Liberal.
A few days later she was waiting for him to die. But Max had other ideas.
From hospital he was moved into the palliative care unit of Bear Cottage at Manly where the waiting continued for what they were told was inevitable death. Still, Max had other ideas.
From Bear Cottage he was moved home to Dubbo where Amy and Rob had to care for him around the clock.
“This was pretty daunting because we were so used to help from nurses,” said Rob.
“Now we had to do everything ourselves.”
Max suffered frequent seizures in those early days at home, which were traumatic for his parents as well as for him. They have lessened but they still occur.
The everpresent dangers are infection and pneumonia, which was expected to take his life in the early days after he became ill.
The staff at Bear Cottage have the heartbreaking responsibility of helping families prepare for loss of life and one of the many ways they help parents is by creating lasting memories of their children such as framing hand and footprints.
Amy got some of Max’s footprints made into stickers courtesy of Luke and Emma Lyons of Signarama, Dubbo, and Rob in some of his reflective moments would leave them at locations as he wandered around Manly.
“It was my way of sort of letting him know I was thinking of him. Leaving his mark on places where he would probably never get to visit. It was a way of saying Max was here.”
Before his illness, Max was drawn to things yellow, so this colour has become a bit of a theme for the family.
They have a Facebook page, Yellow for Max, where they tell his story and promote their fundraising cause. The page has been liked by more than 2300 people, which is growing daily.
They also got the footprint stickers printed yellow and Amy’s mother, Maureen Glover, came up with the idea to sell them for $5 each as part of their fundraising efforts.
The idea has taken off and friends and family of the McIntyres have been leaving footprints around Australia and the world.
“Max” has now been to Nobbys Beach at Newcastle, Sydney Harbour, Uluru, Mount Solitary in the Blue Mountains Wilderness, the Chain Bridge in Budapest, Big Ben in London, Central Park in New York, and even the Eiffel Tower in Paris.
And there have been quirky sightings of Max footprints – on surfboards, on a sign “Amyville”, at the Junee Chocolate Factory and even Hawaii . . . all these images and many more can be seen by visiting the Yellow for Max Facebook page.
“It has just been incredible,” says Rob. “We have just been overwhelmed by the response.”
Amy is reluctant to get too optimistic but she has been buoyed by small but encouraging improvements in her son.
“We have got some of his personality back,” she says.
As well as caring for Max around the clock, Amy has been researching his condition and searching for some answers. The couple knew Max was blind but they had a hunch he could hear, which was confirmed by tests.
“It has been so exciting that he recognises different voices and he just loves singing and music,” Amy says.
"One day, out of nowhere, he just started smiling. Then there was a bit of a grin. Later a giggle. That just blew us away. It made us very happy.”
Incredibly, Max’s eyes are not damaged. His blindness is a result of nerve damage behind his eyes, so Amy’s research aims to discover if stem cell surgery can help repair that and, hopefully, improve his quality of life. But they are not getting ahead of themselves.
They know he has suffered significant and irreparable brain damage – it is all about improving the quality of his life and time is critical.
“We know it’s not about a cure. We accept that,” says Amy, who explains that scarring of the brain can get worse with the passing of time.
“The sooner we get treatment the better.”
The family don’t know how much they will need for treatment, airfares and living expenses but they have set a tentative fundraising goal of $100,000.
The Western NSW community, especially their home town, Dubbo, has rallied behind them with an array of activities to raise money but there is a long way to go. If you would like to buy a sticker, go to the Yellow For Max Facebook page, email yellowformax@gmail.com or donate via Hair for Max on Facebook.
