‘You look like custard,’ one boy teased. ‘Custard Face!’

‘Or mustard,’ said the other boy with a snigger.

‘Mustard custard!’ said the first boy.

The two looked at each other, then shouted in unison, ‘Mustard custard!’ They fell about laughing.

School was over for the day. He shouldn’t have to put up with this anymore. Dillon tried to walk away, but they followed, pointing and taunting. He sped up.

Dillon could feel eyes upon him as he raced through the schoolyard. He was often looked upon with ridicule or with pity. Both were equally bad. Some kids made fun of him. Others felt sorry for him. Some didn’t care. But everyone knew that he was different.

Dillon felt the sting of tears in his own eyes. He sprinted out of the grounds and down the street.

He ran and ran. He didn’t really think about where he was going. But it wasn’t home. He just wanted to escape – to exhaust his frustration and get it out of his system. His feet pounded on the footpath, his breath heaved in and out and his mind whirled with a confusion of emotions.

He had become pretty good at ignoring what people said about him – to him. But it still hurt, even when he didn’t show it. It was hard to conceal what he felt; sometimes he couldn’t help reacting. Things had been building up for a few weeks, ever since those two new boys had shown up.

And now he let it all out. Dillon shouted as he ran – a loud, mournful wail.

An elderly man, pruning his roses, glared at Dillon. A lady pushing a pram on the other side of the street stared as he ran past.

Dillon ran off the footpath and across the expanse of green before collapsing under a tree. He leaned against the trunk, gasping for air, and cried.

He wasn’t sure how long he was there for, but his eyes were sore and his throat raspy by the time the tears dried up. He pulled a crusty old tissue out of his pocket and wiped his nose.

Finally looking around, Dillon discovered that he was in a park. The leafy trees and the grass beneath made him feel calmer.

I wish I was like everyone else, he thought.

Dillon liked stories. He enjoyed books and films with fantastical plots and impossible things. But he was pretty good at keeping grounded. He knew the difference between fantasy and reality. He knew what his situation was and he knew his disorder wouldn’t just go away.

But, right now, he closed his eyes and wished anyway. It was a desperate, heartfelt, aching wish, whispered on a breath.

I wish to be normal.

Of course, it did not come true.

He opened his amber eyes and stared at his jaundiced skin, contrasted against the dark blue of his school uniform. He was very yellow.

Dillon’s heart skipped a beat.

He was too yellow.

When he was younger, his parents had used a handheld device called a bilirubinometer to measure the amount of toxin in his system. Based on the readings, they knew how much time he had to spend under the lights. But, over the years, they had become pretty good at judging things by the colour of his skin. Looking at his skin now, Dillon knew that he needed more light.

He stared up at the dark, brooding sky. It had been overcast since morning. Without any sun during the day, he would normally go under the lights as soon as he came home after school.

Dillon realised he had no idea what time it was. How long had he been out here? How much time under the lights had he already missed? With storm clouds covering the sky, there was no sun to give him a hint as to how long he’d been in the park. He looked around and realised he didn’t even know where he was. He rarely went out on his own. The five-minute walk between home and school was usually it.

I better find my way home, he thought.

He jumped to his feet. His head felt light and he stumbled, sitting down again, hard. He felt tired and a little unwell. He had not had enough UV light today and the excess bilirubin was beginning to have an effect on him.

He got up slowly and glanced around. He had to get home. Fast! But which way?

A drop of rain hit him on the nose.

Dillon looked up.

Larger drops splattered onto his face and thunder rumbled in the distance. As Dillon headed for the houses beyond the trees, the rain fell in earnest. It was a downpour. It only took seconds for him to be soaked to the skin.

Stumbling from the greenery onto the street, Dillon squinted. He didn’t recognise the name on the street sign. The houses were unfamiliar.

Dillon’s heart raced as panic set in.

What if I can’t find my way home? What if I don’t get to the light? I’ll get sick. I could die.

Dillon sobbed, unable to decide which way to go. A wave of dizziness washed over him and he realised how tired he was. His legs felt weak and his arms hung limp at his sides.

Is this how it starts? he wondered.

He had never missed a session under the lights before. He wasn’t sure what would happen. But he knew it was bad.

Dillon remained standing in the middle of the road, rooted to the spot, shivering.

What am I going to do?

Lights approached, cutting through the dank remains of the day. They were blurry and indistinct, but they moved towards him.

Headlights!

A car pulled up.

There were voices.

And then there were arms around him. Hugging him. Lifting him and bringing him into the car.

It took Dillon a few moments to realise that his parents had located him. Somehow they had found him.

And then he was clinging on to them, as if he might lose them if his grip were too weak.

‘I’m sorry,’ he sobbed.

The memory still gave Dillon chills.

His parents had rushed him home, dried him off and put him in the light box.

The next day there was a visit to the doctor and a hearing check. Excess bilirubin could collect around the brainstem. The first effect would be on hearing. So regular six-monthly hearing checks were a part of Dillon’s life. After finding him at the park, so much more yellow than usual, an extra hearing check seemed like a good idea. Thankfully, everything had been okay.

Dillon swallowed. Hard. He shifted uncomfortably on the plastic stool in his light box.

What would have happened if his hearing had been affected? If the build-up of bilirubin had continued? Deafness would have been the next stage. And then his intellectual development would have been affected. And then …

Dillon took a deep breath and shuddered. He didn’t want to think about it.

Dillon knew he wasn’t like everyone else. He knew there was no point in wishing to be normal.

He tried to focus instead on what made him feel good – his home.