HUMBOLDT — A Humboldt family found themselves making a GoFundMe account in an effort to pay for their three-year-old daughter’s medical treatments.
On March 31, Kerri Archibald and Cam Koski noticed behavioral changes with their three-year-old daughter, Brinkley Koski.
These changes included motor and verbal tics, hyperactivity, mood swings, sensory issues, obsessive–compulsive behaviors and absence seizures.
“It was just suddenly a wave of these crazy symptoms that just started out of the blue,” Kerri said.
The family first talked to their doctor, where they discussed the possibility of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) or Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection (PANDAS).
PANS is an infection-induced autoimmune condition that disrupts normal neurological functioning, caused by inflammation of the brain, whereas PANDAS is a disorder associated with only streptococcal infections.
The doctor referred the family to a neurologist.
“The one good thing about all this is the neurologist usually has an eight month wait but we were able to get a phone consultation with her quite quickly,” Kerri said. “She and several other doctors did send us for blood work, but due to COVID, microbiology wouldn’t process her bloodwork so we had to send her four separate times.”
After tests for Lyme Disease came back inconclusive, the family made the decision to send their daughter’s blood to Germany to test for it.
The results came back confirming that Brinkley did have Lyme Disease.
The parents would then go on contacting several specialists for PANS, eventually finding one in British Columbia who was taking on new patients.
“Since then I’ve had many phone calls from other families in Saskatchewan dealing with this, particularly Lyme. That’s where we found out that there’s a pediatric doctor in Connecticut who has been treating kids with Lyme for many, many years,” Kerri said.
“Our goal would be hopefully we can see that doctor when it’s safe to travel again.”
The first six-weeks of the illness led up to costing the family about $5,000 for out-of-pocket medical expenses.
“We’re shocked at how quickly it added up. Even her antibiotics, which would be free under our healthcare we’re having to pay to get shipped out from B.C.,” she said.
“We talked to many families who have been spending upwards of $60,000 to $80,000 over a few years treating their kids with Lyme.”
Like many people, Cam was laid off from his job in March due to the COVID-19 pandemic, while Kerri just returned to work in February after a yearlong maternity leave.
“We just knew we couldn’t keep up at this rate, and that’s when we decided to accept the help that our friends had offered us.”
On May 20, her friends Heidi Phillips and Rod Zwarych set up a GoFundMe for the family.
As of May 25, that GoFundMe has $26,387 raised with 308 donors.
If Kerri could get a message out to the public, she said it's awareness for parents.
“When we realized it was PANS and PANDAS, and I started reaching out to these other parents in the prairie provinces that had it, they were astounded that we figured it out as quick as she did and sought medical care. Lots of them go years with misdiagnosis or not being diagnosed before they get to the route of it and by then it’s obviously a lot harder to treat.”
Kerri said that it feels frustrating to not have this covered by the healthcare system.
“Once you talk to enough people you learn that we’re definitely not alone in this. There have been some people that have very outspoken in all of this, and of course you contact your MLA and some of them get on the news or articles are written, but it seems that there just needs to be a change in our ability to recognize Lyme in Canada and be able to treat it properly.
We’re one of many families who have to go this route through these medical disorders, unfortunately.”
Brinkley’s GoFundMe can be found at gofundme.com/f/help-heal-brinkley.
