Bentley’s battle with Lyme Disease

Bentley is a 7 year old fun-loving, wild child whose sparkle has dimmed due to her recent diagnosis; Lyme Disease. Since Lyme Disease is not recognized in Alberta, all testing and medical costs are paid for out of pocket by her family. Bentley and her family have exhausted all treatment efforts here in Alberta, only to have Bentley’s body reject it as she is so depleted from being misdiagnosed prior. They are now planning to travel out of country for treatment, which will cost them, not only more money, but more time away from living their normal adventurous life. My name is Kelsey and I am Bentley’s auntie. We will do whatever it takes to help our girl, so if you feel inclined to do so, any and all donations to help Bentley’s family with the current and up coming medical costs will be very, very much appreciated. For a deeper dive into Miss B’s story, read below an excerpt from her Momma’s perspective:

She was full of life, impossible to keep up with — always moving, always talking, always dreaming.

She lit up every room with her fearless energy.

In the fall of 2022, she started kindergarten and joined hockey soon after. What we thought was normal exhaustion from busy days quickly turned into concern. While other five-year-olds bounced through their days, Bentley was always tired — worn down in a way that didn’t feel right.

We took her to the doctor.

They found nothing.

We were told everything was fine.

But nothing felt fine.

She kept complaining of pain — especially in her side, near her spleen. More doctor visits. Eventually, we were told she had Epstein-Barr virus and were referred to a specialist. But the months passed, and Bentley never got better. She still needed naps. She couldn’t handle full days. And still — “everything looks normal.”

Then, January 2024 hit.

She crashed.

A full-body rash. A high fever. She could barely move.

She was admitted to ICU for a week.

In February, there was still no improvement.

We watched our daughter fall behind in school — especially in reading. Her energy faded. Her light dimmed. And we still had no answers.

In March, two years after the Epstein-Barr referral, we finally saw a pediatrician. Blood work again showed “normal.” We were told her tonsils needed to come out — maybe it was sleep apnea. Maybe narcolepsy.

In June, her tonsils and adenoids were removed.

For two weeks, we thought we had our girl back.

Then the crash came.

And this time it was worse.

She was constantly in pain. Always tired.

She stopped riding her horse — her favorite thing.

She stopped greeting her dad when he got home from work.

She pulled away. She slept constantly.

We kept pushing. More specialists. ADHD? Sleep apnea again?

They prescribed a stimulant to “keep her awake during the day.”

I asked the pharmacist what it was.

They said: “It’s basically legalized cocaine for kids.”

We stopped it immediately.

October, we saw a naturopath. She told us Bentley’s lymphatic system was compromised and started her on a supplement protocol. Still… no change. And one night, Bentley broke down in tears and cried:

“Why is my body always in pain?”

That was the moment I snapped.

We got passports. We were done waiting.

We were going to find help somewhere.

A family member reminded us of a doctor in Red Deer. We booked a consultation, and finally — someone listened.

She agreed: this wasn’t normal.

She ordered bloodwork and a Lyme disease test. But AHS refused to run the test.

So we booked a private CT scan in Calgary — we had to fly there just to get it done.

That doctor referred us to a naturopath she works with, and we began private testing: Lyme, mold, and more.

Bentley’s mold toxicity came back high.

We did a $30,000 home renovation and found the mold.

We ran a private Lyme disease test.

It came back positive.

Every single test, every specialist, every supplement — we paid for out of pocket.

No coverage. No support. No recognition.

To this day, for Bentley to get care or treatment, we have to leave the country.

There are almost no pediatric Lyme treatment options in Alberta. We found one clinic in Calgary, prepared for a month-long stay — and it failed after one week. Thousands of dollars lost. No help. No relief. No answers.

Bentley fights every day.

She is in pain.

She is cognitively impaired.

She forgets things. Her body crashes. Her emotions swing.

She is only seven.

And our healthcare system refuses to acknowledge the very thing stealing her childhood.

We’re telling Bentley’s story because it shouldn’t take this much pain, money, and persistence to get a child help.

We’re sharing her story to raise awareness, demand change, and fight for every family who’s been dismissed, ignored, or left behind.