The boy who can't eat

ALEXANDER'S STORY: West Melton 10-year-old Alexander Vane is living with an incurable and rare immune condition, but has ...

ALEXANDER'S STORY: West Melton 10-year-old Alexander Vane is living with an incurable and rare immune condition, but has no intention of letting it slow him down.

Alexander Vane has never had a birthday cake, never had chocolate, and only ever had one icecream.

The 10-year-old from West Melton, Canterbury, suffers from a rare and incurable immune condition called eosinophilic oesophagitis.

The white T-cells that are meant to protect the body are actually attacking his. The condition is thought to be linked to a food allergy, which means eating has become Alexander's enemy.

He is at the most severe end of the condition, and has been on and off food, relying instead on an amino acid formula with no proteins.

"You can't say I'm putting on weight, because I'm eating stuff that doesn't put on weight," he jokes.

Despite his body's aversion to food, Alexander loves watching celebrity chef Jamie Oliver. He watches his shows, copies his sayings and even has bookmarks all through his cookbook.

But he also suffers from painful hiccups, and his ambition is to become a doctor or a researcher, with his first "easy" task to find a cure.

Alexander was born with the condition, but wasn't diagnosed until he was 15 months old, when his mother, Sarah Vane, said she almost lost him.

"[The doctors] just didn't want to listen. We kept going in and out and he would be screaming and vomiting - they said he would grow into himself."

Alexander was so weak and skinny that he couldn't even cry.

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Vane does not blame the doctors. It was a "difficult time", she said, and no-one knew what they were looking for.

Vane had worked for 20 years before having to give up her job, as she was too tired and even became sick herself.

She is now Alexander's fulltime carer.

The Vanes have no family to help them and their friends have dropped away; they did not understand that Vane and her husband, Paul, could not go anywhere or do anything because Alexander was too sick.

Throw in their Heathcote home being destroyed in the earthquakes, and it all becomes "overwhelming".

"It's a really lonely journey and it's really tough," Vane said.

"You are lucky to survive as a family, let alone any other way, really."

The Vanes have cashed in on their superannuation and used up their savings caring for their son. Alexander describes himself as being "creative and funny".

"I like to investigate things and I like doing stuff outdoors.

"When you have had it for about six years or over, it just gets much easier to do, because it's just routine."

A fundraising page has been started for the family to help out with medical costs, tutoring for Alexander's education, and potentially a jungle gym for his upper body strength.

To donate to the family, visit: givealittle.co.nz/cause/alexanderfuturefund.

 - The Press

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