DELTA — Four-year-old Logyn, with big blue eyes magnified through thick-lens glasses and a megawatt smile, squeals with laughter as he plays a game on his mom’s iPad on a Wednesday afternoon.

The little boy, seated on a couch between his mom, Kirsten Hedberg, and his seven-year-old sister Bronwyn looks like any other happy kid.

The difference is, Logyn suffers from focal segmental glomerulosclerosis (FSGS), a rare disease in which the kidneys attack themselves.

He has a pump permanently implanted into his chest and feeding tubes through his stomach. He’s also had a kidney removed.

But you would never guess it by looking at him, big toothy grin et al.

“Two and a half years ago, we were at the waterpark to celebrate Bronwyn’s birthday, and I noticed after we had been there for a little while that (Logyn) was starting to get puffy, and I thought ‘What’s going on here?’” explained Hedberg at her North Delta basement suite.

Hedberg, a single mom of three and a lisenced practical nurse, said she thought her son may have been stung, so gave him some Benadryl and put him to bed that night. She thought something was up when, the next day, her son hadn’t urinated and his eyes were nearly swollen shut.

“I took him to my family doctor and we were admitted that day to Surrey Memorial Hospital. They originally thought it was minimal change disease, which is a nephrotic syndrome that most kids grow out of in time,” she said.

After six months of treatment, it turned out that Logyn didn’t have minimal change disease—and Hedberg and her son were admitted to SMH once again in November of 2012. The pair didn’t come home until a month later.

“Unluckily for Logyn, he has a very aggressive form of (FSGS),” Hedberg told the Now.

“It was decided that some further steps were going to have to be taken, and it would be a better idea if we were with Children’s Hospital from now on.”

That’s where Hedberg and little Logyn got hooked up with Variety — The Children’s Charity, which helps pay for the extra 20 per cent that Hedberg’s health insurance doesn’t cover.

“On average, his medical bills are $600 a month, just to feed him,” Hedberg said.

“He’s tube fed three times a day, all his medications are through the tube and he’s on a really specialized diet.”

For one hook-up bag of food, the cost is $10. Though Logyn technically can be fed orally, his appetite is virtually non-existent because of his disease.

“If (Variety wasn’t) there for us, there’s certain things we wouldn’t be able to do, so I’m really grateful to them,” Hedberg said, tears welling in her eyes.

So far, Variety has helped out with nearly $2,700 worth of special feeding products, diapers, a feeding pump and a backpack.

Even with such an intensive day-to-day schedule of feeding, check-ups, iron infusions and more, Hedberg said her four-year-old “smiles through it all.”

“In the last two and a half years, we have spent over 10 months in hospital,” she said.

“It’s a pretty amazing thing to watch your child go through this, but he’s my warrior because through it all, his spirit doesn’t dim. No matter how sick he gets, no matter how much pain he’s in, he still smiles and battles through, and every time he bounces back.”

Logyn laughs and cuddles up to his big sis, and it’s impossible to see him as anything less than lively.

“There’s people out there who have needs that are greater than ours, but it just gives me a chance to feel good about some of the bad,” Hedberg said of her help from Variety.

Tune in to Global BC for the 49^th annual Show of Hearts Telethon, benefiting Variety, from Saturday, Feb. 14 at 7 p.m. and goes until Sunday, Feb. 15 at 5:30 p.m. Entertainers include Paul McCartney, Lady Antebellum, James Taylor, Sheryl Crow and Elton John.  

Surrey Now