Kendall Sullivan couldn’t figure out what was wrong with her baby daughter.
In 2001, the former Yukon singer/songwriter went to Ontario for six months to play some festivals and be with her dad, who was diagnosed with cancer.
The move became permanent when she met the man who would become the father of her two children.
Now, 10 years later, Sullivan’s a single mom, struggling with an unhealthy second child.
Sick since birth, her little girl has been shuffled from specialist to specialist.
“There were many different theories as to what was wrong with her,” said Sullivan.
Usually doctors claimed she had an ear infection and prescribed antibiotics.
But as soon as the prescription ended, the symptoms would return.
“Ella was always tired and clingy,” said Sullivan.
“She wasn’t what a kid should be.”
Finally, when Ella’s high fever roused the family once again at 2 a.m., Sullivan had enough.
She packed up her son and Ella and drove four hours through the night to Toronto’s Hospital for Sick Children.
This time, the doctors said Ella had strep throat and, once again, prescribed antibiotics.
But Sullivan refused to leave.
“I couldn’t keep living like this,” she said.
Ella couldn’t go to daycare, because she had a fever and her welcome at the neighbours, when Sullivan was at work, was starting to wear thin.
After seeing a nose, ear and throat specialist, Ella was sent home with more meds.
Then, a deep red lump appeared on her throat.
When doctors removed the lump, they were surprised to find the fatty tissue in the little girl’s neck disintegrating and turning grey.
“And the lump was much larger under her skin,” said Sullivan.
Tests on the lump were inconclusive.
“There was undiagnosed bacteria,” said Sullivan.
It wasn’t long until Ella was once again experiencing all the same symptoms.
“He brother was just go, go, go and she didn’t have the same stamina - she never did,” said Sullivan.
Around this time, Sullivan’s ties to the Yukon became a saving grace.
Fellow Yukon singer/songwriter Nicole Edwards - who has been struggling with a rare disease called scleroderma, which, in her case, causes a tightening of the skin, especially on her face and hands - recommended Sullivan and Ella visit her specialist, just outside Toronto .
The specialist, who tests for food sensitivities, had a diagnosis almost immediately.
Ella has Lyme disease.
“He asked if I’d ever been bitten by a tick, and I had, 16 years ago in Banff,” said Sullivan.
“We got the whole tick out and I didn’t think there was much to worry about, at the time,” she said.
But in the last few years, Sullivan realized she too was displaying symptoms of Lyme disease.
She just hadn’t known it.
Lyme disease, when left untreated, ends up affecting, the joints, heart and central nervous system.
“It can bore into your brain and you start losing your cognitive abilities,” said Sullivan, who’s been having unexplained twitches and memory issues of late.
Sullivan unwittingly passed the disease on to Ella during pregnancy, or possibly though breastfeeding, she said.
For some reason, her firstborn didn’t get it.
“Not many doctors are literate on Lyme,” she said.
“And often it’s misdiagnosed as Lupus or MS.”
To battle the bacteria, Sullivan and Ella have to starve it out.
Lyme likes friends, said Sullivan.
It attracts other parasites and sets up shop inside them.
“So you have to peel back all these layers to get to the Lyme.”
Edwards had Lyme too.
She was bitten by a tick when she was young and didn’t realize the repercussions until it was way too late.
By then, the Lyme bacteria had wooed the scleroderma into Edwards’ system.
And there is no known cure for scleroderma.
Sullivan and Ella have been going through various detoxes and cleanses, and aren’t eating sugar, dairy, wheat, fruit, yeast or anything fermented.
“The list is long,” she said.
And it’s hard for Ella at school to eat berries when the rest of the class is eating cake.
But the little girl is following the diet religiously, because for the first time in her young life, she is starting to feel better, said Sullivan.
Now, their only problem is money.
Visits to the specialist, which take 10-hours round trip, cost upwards of $800.
And whenever Ella has any signs of illness, Sullivan can’t go to work.
“I keep going over the costs in my head,” she said.
“And I can’t even afford our next appointment.
“I am stressed, but I have to try not to be stressed because it aggravates the Lyme.”
Around this time, Sullivan got a call from Ella’s aunt, who lives in the Yukon.
She’d decided to host a fundraiser for Sullivan and Ella.
A host of fellow musicians are on the bill, many of whom Sullivan played with during her stint in the territory.
“When I saw the poster, I just bawled my eyes out,” she said.
Life in Ontario is “fast paced,” she said.
“Even in a slow town like Peterborough.”
Now, as the Yukon connection keeps resurfacing, Sullivan is considering moving back with her young family.
“It would be a great place to raise my children,” she said.
The fundraiser for Ella and Sullivan is Thursday, September 8 at the l’Association franco-yukonnaise.
It’s a concert with food, a silent auction and a cake auction.
Performers include, Jim Vautour, Vanessa Marshak, Nicole Edwards, Kim Rogers and Joe Bishop.
“It’s amazing people are doing this when we are way over here,” said Sullivan.
“It takes a huge weight off.”
The fundraiser is from 5 p.m. to 10 p.m.
Contact Genesee Keevil at
gkeevil@yukon-news.com