‘I was beyond scared’
Fundraiser aturday for Trent Nimeth, 7, for Lyme disease treatment in the U.S.
It was Easter weekend. And the parents of a seven-year-old boy were scared. He had been a medical mystery all his life and this time they were driving him home once again into the unknown.
He’d had seizures for four days. The type that made his entire body convulse.
They had taken him to the ER. And again, no one had answers.
“My husband is a strong and sturdy man,” says Danielle Nimeth of her husband, Matt, a carpenter. “He’s very level-headed, a clear thinker.
“On the way home, he said, ‘I’m scared. This is scary. He’s declining very quickly and there’s no help. I don’t know what to do anymore’.”
In Danielle’s words: “I was beyond scared.”
In the seven years of Trent’s life, he had seen some 30 medical professionals — 13 in the past two years. He had many labels, many diagnoses. Tourette’s syndrome. Obsessive compulsive disorder. Learning delays. Sensory processing disorder.
In their opinion, labels without a root cause.
Danielle was tired of more labels, more misdiagnoses. “It’s not good enough to put a classified label of a symptom on something,” she says.
“We agreed that we had to take it into our own hands and figure this out.”
They shared their son’s story on a Facebook group page for parents of children with neurological issues. “The response was overwhelming,” says Danielle. “Late stage Lyme.”
They were directed to a naturopath in British Columbia, and paid $1,800 for a blood test in the United States simply to “rule out” Lyme. It came back positive.
They hope to send him to the Sponaugle Wellness Centre in Florida for treatment.
The estimated cost, including tests and accommodation, is about $120,000.
On Saturday a fundraiser will be held at Merritton Community Centre to help the family. The couple owns and operates N3 Carpentry and Danielle is also a manager at the Water Superstore.
Lyme disease is an infectious disease spread through the bite of infected ticks, the blacklegged tick in this area. Trent’s parents never found a tick on him, or saw the bull’s-eye rash that commonly, but not always, appears a few days after an infected bite.
Since the diagnosis, he is being treated by a St. Catharines naturopath who has prescribed him a cocktail of supplements and
other regimes. His seizures are gone.
“He’s responded really well which just confirms in our gut that we’re on the right track,” she says.
He has never been tested for Lyme disease in Canada. Danielle requested a test from a pediatrician and a neurologist, but neither felt it was warranted, she says.
The journey to help Trent has turned them into detectives.
“It’s been one little clue at a time,” says Danielle. “And not necessarily understanding how they all connected until this year.”
Early in his life, they noticed a relationship between food and symptoms. By age four, they had removed all foods with food colouring from his diet. Their suspicions were confirmed one Christmas after he ate a candy cane. “Within minutes he was on the floor crying his eyes out, telling us he didn’t know why,” says Danielle.
They have since removed gluten, dairy and sugar from his diet. Sugar seemed to trigger eye, face and body ticks.
He had to stop playing ball hockey this spring because of pain and inflammation in his joints and brain, she says. He couldn’t run or wear a helmet anymore.
He has also stopped attending St. Ann’s school in Port Dalhousie because he doesn’t have enough energy. A teacher comes to his house.
Trent is their only child. “He’s an old soul with an engineering mind,” says his mom.
“He’ll look at something and want to take it apart and put it back together.”
To date, they’ve fundraised about $10,000. They can’t make an appointment at the centre until the have raised enough money.
“He’s seven. He’s got a full, healthy, happy life ahead of him,” she says.
“He deserves that.”