Here Devon Starr, 35, tells the story in his own words.
Gazing at our baby boy in the hospital crib, my wife Whitney teared up.
‘He looks burnt,’ she wept. ‘I’m so scared.’
Throughout the pregnancy, there had been no signs that anything was wrong.
But when tiny Lucas was born his skin was charcoal black.
There were raised, mole-like spots on his face, and almost his entire body was rough in texture and covered in big bumps and lumps.
‘We aren’t exactly sure what Lucas has,’ the doctor told us.
As specialists ran tests, all Whitney and I could do was wait and hope he would be okay.
Not knowing if our precious boy was in pain, we couldn’t cuddle him, but we never left his side.
Two days later we got an answer.
‘Lucas has giant congenital nevus,’ the doctor said.
He explained it’s a rare disease caused by a genetic mutation, where moles and birthmarks appear all over the body.
Fleshy and noncancerous, they could be removed.
They weren’t just on the skin though – they also grow internally.
And it was those that made us worry.
The textured spots on his face and neck were burrowing into his head and spine, so he was more susceptible to masses and lesions on the brain.
‘What does this mean?’ I asked.
‘He will have to be monitored his entire life,’ the doctor said.
To make sure the lesions weren’t attacking his brain, Lucas needed constant checkups.
Thankfully, it didn’t affect his development and he gurgled away happily and hit all his milestones.
We’d dress him in baggy clothes so the material didn’t rub the tumours.
He also had lots of surgeries.
Each time a bump grew too big or in an awkward spot, he’d have an op to remove it.
They would return, but nothing held our boy back.
‘Look Daddy, I’m doing it,’ he beamed, as he sped down the road on his bike.
Out shopping, I could feel people’s eyes on him.
Lucas knew it too, and I could see the fear in his eyes as people stared.
‘It’s a birthmark,’ I would tell strangers, as he hid behind my legs.
‘You’re extra special,’ Whitney would tell him.
Our friends and family were so supportive, but strangers were shocked when they saw him.
‘I just want them to stop looking,’ Lucas wailed.
When he turned four, he became a big brother to our fiery daughter Kaylee.
That’s when his confidence started to blossom.
When Kaylee was learning to walk, Lucas was there.
And when she was big enough, the two of them would laugh as they wrestled.
At home, Lucas was a completely different person to when he stepped outside.
Whenever I picked him up from school, he shared yet another story about being bullied.
‘They called me wolf boy,’ he said. ‘I don’t know why, I’m the same as everyone else. I just look different.’
It broke our hearts.
One night, as I pulled up his blanket and tucked him in, I sat on the edge of his bed.
‘You know you have this incredible gift,’ I told him.
‘I do?’ he asked.
‘I have never met anyone who can grab every single person’s attention when they walk through a door,’ I smiled.
‘It’s because they’re scared of me,’ he sighed.
‘Use it to change the world,’ I said, kissing him goodnight.
Amazingly, the next time we went to the store Lucas didn’t hide his face.
‘I have giant congenital nevus,’ he told the person glaring at him.
Whitney and I made sure we all had lots of fun and encouraged him and Kaylee to live life to the fullest.
Then last year, when Lucas was 11, he was having terrible headaches, so we took him for a check-up.
The doctors found a walnut-sized mass on his brain.
Instantly, Whitney and I burst into tears, worried that we might lose him.
But going for surgery to remove it, Lucas didn’t bat and eyelid.
‘It was just another road block,’ he said.
‘You’re one tough kid,’ the doctor said.
He really is.
He came out as a fighter and, now 12, he’s so strong.
Lucas is proving that if he wants to do something, he will.
He loves spending time with his best friend, playing video games and dreams of being a race car driver.
‘It doesn’t stop me doing anything,’ he says.
After 25 surgeries to remove the reappearing tumours, he just accepts what life has thrown at him.
On the inside, the tumour covers his spine and brain, and on the outside, it’s on most of his body and quite hairy.
He’s using it to educate the world that being different doesn’t stop you from doing anything.
We’ve even set up a Facebook page to share his journey,
We want to inspire others that normal, regular life is there for everyone to have.
If I teach my boy one thing, it’s to not be embarrassed of who he is.
He is a regular boy with this amazing super
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