Cameron Miller, 48, Melbourne, Vic shares his story:
My son Shaun, eight, sat on the couch glued to the telly.
He was watching his favourite movie, The Sandlot, yet again.
It didn’t matter how many times we viewed the comedy-drama about a bunch of kids who loved baseball, Shaun never failed to find something new to love about it.
Part of me wondered whether it was because the film represented a world that was so ordinary for most kids.
Sadly, it was a life he’d never really been able to lead himself.
Shaun had been born with congenital heart disease (CHD), which meant he struggled to pump enough oxygen-rich blood around his body.
At just three weeks old, my brave boy had his first heart operation.
“We nearly lost him on the table,” the surgeon told me afterwards.
I knew it wouldn’t be Shaun’s last operation.
Shaun in hospital at just three years old.
(Image exclusive to Take 5)For years, he was at the children’s hospital every week.
Sadly, I split with Shaun’s mother and he later came to live with me.
Having CHD was a lot for a young boy to deal with.
It didn’t help that some kids teased Shaun for being weak, but he never let it get to him.
By the time he was eight, he’d proven himself to be a real soldier.
One day, we were having a bite to eat at Maccas when, all of a sudden, Shaun vomited blood.
We rushed to hospital, where we learned that he was going through heart failure.
“If he doesn’t get a heart transplant within forty-eight hours, Shaun will die,” a doctor warned me.
I went completely numb, unable to process what I was being told.
Everything had been going so well.
“I’m only eight – I don’t want to die, Dad,” Shaun pleaded, devastated.
Shaun in the intensive care ward.
(Image exclusive to Take 5)Doctors prepared us for the worst and told us to gather anyone who wanted to say goodbye.
I spent the next day restless with worry, knowing that the chances of a heart coming through within the next few hours were slim.
Shaun lay in a hospital bed and stared at the ceiling.
Snapping out of his trance, he told me how he’d seen a bright light and an old man had spoken with him.
“I’ve been told to go away and be positive – I’ve got work to do,” Shaun told me. “And I’ve got really good news. I’m getting a new heart.”
I wondered if the medication might’ve been playing tricks on his mind.
Not wanting to get his hopes up, I tried to reason with him but he was certain what he’d experienced was real.
Five minutes later, a nurse came to speak with me.
“We’ve got a heart for Shaun,” a doctor said.
I could hardly believe it – miracles really did happen! I started to believe that what Shaun had seen was true, after all.
The operation went smoothly and, for the next few years, we got on with life as best we could.
Me with my beautiful boy Shaun.
(Image exclusive to Take 5)When he was 13 and starting high school, results showed Shaun’s body was starting to reject the heart he’d received and his arteries were thinning.
The only solution was receiving another heart.
It was agonising to go through the waiting game again.
Eight months passed before we got the call saying a heart had been found.
Shaun took it in his stride.
Later, when he found out that Mark ‘Chopper’ Read, the former gang member was in need of a liver transplant and adamant he wouldn’t go through with it, Shaun penned a letter to the newspaper urging him to reconsider.
Don’t think about what you’ve done in the past, he wrote.
Think about the future of your boys.
Please get the liver transplant.
Shaun helped promote DonateLife week.
(Image exclusive to Take 5)Chopper was so touched by Shaun’s letter that he wanted to meet us.
He and Shaun got on great, and Chopper even gave him his fedora hat to keep.
Despite all he’d been through, Shaun was worried about me being lonely and thought I should try dating.
He helped me create an online dating profile and browse the single women.
“She looks like she’d be good for you, Dad!” he said, pointing to a beautiful woman with blonde hair.
Her name was Sally and we later became a couple.
She and Shaun were so close.
I felt stoked to have such an amazing family.
There were days when I almost forgot about the challenges Shaun faced.
When he was 17, he developed stomach problems.
We learned we he was going into chronic heart rejection.
Not again, I thought.
Doctors gave us an estimate of between weeks and 12 months before we’d lose Shaun.
He knew what this meant and uploaded a video to YouTube.
“Hi guys, I have some bad news I want to tell you all,” he began, fighting back tears. “I have chronic heart rejection and I won’t be around for as long as I thought. But I want to say, this has been an awesome ride and I have no regrets.”
The next day, the video had gone viral.
I had my concerns over him putting himself out there, but Shaun wanted his story to be public.
With Shaun and my partner Sally.
(Image exclusive to Take 5)He’d even been keeping a journal in the hope it would one day be a book.
He also made a cameo on Neighbours.
Amazingly, the Texas Heart Institute got in touch with us and offered a backpack mechanical heart, which would keep him alive until he could have another transplant.
But Shaun wasn’t interested.
“I’ve been through enough, Dad,” he said. “It’s time for me to go.”
I couldn’t understand it, but his mind was made up.
Weeks later, Shaun was in hospital, going downhill quickly.
He asked me to get him some McDonald’s but I’d no sooner walked down the corridor before hearing a code blue alarm go off – he’d gone into cardiac arrest.
Bolting back to the room, I watched my brave boy leave the world, aged 17.
Looking through his journal, I read over the last entry he’d written weeks earlier.
Shaun having a blast on The Footy Show with AFL legend Jobe Watson.
(Image exclusive to Take 5)Somehow, I feel that whatever happens on the other side, I’ll be okay, he wrote.
The next few years were hard as I relived Shaun’s death constantly, wondering how I’d go on without him.
One night, he appeared in my dream.
“Start a foundation, Dad,” he urged. “To help others.”
0Since then I’ve created The Shaun Miller Foundation, written a book, An Awesome Ride, to help those who’ve lost a child and I’m currently working on a big budget film about Shaun’s life which should be in cinemas soon.
His video has been watched by over 7 million people who still write to me and say what an inspiration he was.
I’d trade all of this to have my son back, but I know he’d be proud of me and what I’m doing.
An Awesome Ride by Andrew Clarke and Cameron Miller (Penguin) is out now.
