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Teen turns to community to purchase medical supplies

Nicholas Fex's stomach and back bear the scars of the 45 surgeries he has had in his young life, but despite his challenges, it's difficult for him to hold back an infectious smile that spreads nearly from one ear to the next.
NicholasFex
Nicholas Fex, 17, has turned to GoFundMe to help his mom pay for two custom-made tracheostomy tubes. Photo by Jonathan Migneault.
Nicholas Fex's stomach and back bear the scars of the 45 surgeries he has had in his young life, but despite his challenges, it's difficult for him to hold back an infectious smile that spreads nearly from one ear to the next.

In many ways, Nicholas, 17, is no different than any other boy his age.

The St. Charles College student is a big fan of the Pittsburgh Penguins and likes to play video games in his free time, including Electronic Arts' NHL series, and the Grand Theft Auto games – much to his mother's chagrin.

During a visit to his home on a Wednesday afternoon, he was nervous about his high school graduation that evening, but he was even more nervous about prom, which he'll be attending with Ava Danyluk, the school council president.

But to an outsider, high school prom might seem like a small deal for a young man who has fought hard to survive from the moment he was born.

Nicholas was born with tracheoesophageal fistula; a condition in which an abnormal channel, called a fistula, connects the windpipe – or the trachea – to the tube that leads from the mouth to the stomach – called the esophagus.

Food and saliva can get into the lungs through this channel, which can make a child cough or choke and lead to lung infections or pneumonia.

Nicholas had to be rushed to Toronto's Hospital for Sick Children, where surgeons attempted to repair his esophagus, but stretched it too much.

They had to install a metal stint to keep his esophagus from collapsing – and when he was around one year old, installed a second stint after the middle of his esophagus collapsed.

Nicholas nearly died leading up to that surgery.

Today, Nicholas breathes thanks to a tracheotomy. He cannot eat solid food and sustains himself on a steady diet of Peptamen 1.5, a liquid supplement similar to Ensure, that he receives through feeding tubes.

“It's been a wild ride,” he said.

Now Nicholas and his mom, Lyne Fex, face a new challenge. To keep his esophagus from collapsing again, Nicholas needs a custom-made tracheostomy tube that is slightly longer than normal.

The tubes, which are manufactured in the United States, come at a steep price – around $1,300 each – and are not covered by his mom's health plan because they aren't the standard size.

Each year, Nicholas needs a new tracheostomy tube and a back-up. Fex, who is a single mom, started a GoFundMe campaign to help cover the cost of the new tracheostomy tubes. To date, the campaign has helped them raise more than $1,000.

Fex said the Sudbury Rotary Club is expected to help them pay for the tracheostomy tubes, but even if they cover the entire cost, Nicholas' medical costs continue to add up.

New feeding tubes cost more than $200, for example, and Fex is only covered for two each year – but Nicholas goes through one every three months.

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Jonathan Migneault

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