There's leftover birthday cake sitting in the fridge of Conor Brown's Atwell home. Last week, he blew out the candle on his cake, which was shaped like the number eight.

"It was a vanilla cake," Conor said. "I had a party."

His mother Sam Brown, 38, said her little boy wasn't the only one in their family who got a present.

"There's been situations with Conor where we have been very close to losing him," she said.

"Every day is an absolute gift."

When Conor was 10 months old he was diagnosed with systemic lymphangiectasia, a life-threatening condition which affects fewer than one in one million people.

There is no known cure.

The condition makes a vital protein leak into Conor's body tissue, causing him to swell.

"Some people have brown eyes, some people have blue eyes, Conor has big hands," Ms Brown said.

He also has a smile that can light up a room, a generous heart and an important message for anyone willing to listen.

"Can you please give money to Telethon, please, so that we can help sick kids," he said.

Conor will today become one of the stars of WA's 45th Telethon weekend, but he is more than just a face on a TV screen.

He likes to read, has a yellow belt in karate and he spends lunch and recess hanging out near the tyre-swing with his school friends. It's their spot.

Conor is the only person in Australia who suffers the most severe form of his rare condition, Ms Brown said. But this is not what makes him unique.

His hunger for laughter and life in spite of his illness, is what defines him.

In his family's lounge room last week, Conor played with his new Lego, moving little plastic knights across a wooden table turned battlefield while he considered a question.

"I wouldn't say I'm brave," he said.

There's not much that scares Conor. He does not need to play at being a hero. But he was convinced the bravest person in the world was sitting across the table from him.

"It's Mummy," he said.

His dad Justin, his older brother Aiden and his little sister Eliana all rated pretty highly, too.

Ms Brown said her son had taught her the true meaning of courage.

Being part of Telethon and getting to be on TV and meeting players from his favourite footy team - West Coast - was pretty exciting, Conor reckoned.

He was also looking forward to spending some time with a new friend, his Telethon co-star this year, seven-year-old Bunbury girl Sophie Read.

The pair were at the Coles Kids Carnival at the Perth Convention and Exhibition Centre yesterday. Amid the children's rides set up to help raise funds for Telethon over the weekend, little Sophie looked like any other little girl her age.

"She's happy, bubbly, friendly, just amazing," her mother Aydee Edwards said. "Unless you know there is something wrong with her, you'd never guess, because she never complains about the pain."

Sophie has juvenile idiopathic arthritis, which causes painful inflammation in her joints.

The bones in her ankles are crumbling and no one knows why. Ms Edwards said the family had consulted doctors all over the world. None had seen anything like it.

"The hardest thing is Sophie always wants to go 100 miles an hour. But if she goes 100 miles an hour today, tomorrow she can't walk," Ms Edwards said.

Sophie does gymnastics at school sometimes, even though she's not supposed to. She jumps on the bed when her mum's not looking.

She runs and hides when the nurses come to her house to give her painful injections every week.

She was excited about meeting Fat Cat again today, and all the singers and TV stars who are appearing on Telethon.

Sophie, who loves Barbie dolls and the colour pink, said that when she grew up she wanted to be a ballerina. Conor wanted to be a teacher one day, just like his mum.

Sophie's voice faded momentarily when asked why it was important for people to donate money to help sick children.

"Because it will make them smile," she said.

The West Australian

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