Cure Wylder and Oakley

Our Story

On Aug 29th at Calgary Foothills Hospital, we were gifted with beautiful twin boys; Wylder and Oakley. Five weeks premature and undersized from the start, they came into the world as a duo, ready for anything together.

Wylder, the first, is named after the Old English name for "wild animal", someone who is untamed, free-spirited and adventurous. It was fitting... the nurses called him a fighter.

Oakley, one who took his time, is named after the Old English word for "oak tree meadows", someone who carries a sense of strength and stability. The nurses called him an old soul.

What a duo, we thought.

Our boys had arrived. And before they'd know it, they were separated.

Our Fight

We'd soon learn both of our boys were born with a rare genetic disease called ABCA3, which can cause interstitial lung disease. Thankfully, Oakley's condition hasn't presented symptoms yet. Wylder's condition is severe. He's been in the hospital for over 130 days. It's all he's known.

ABCA3 has no known cure. Most children born with this disease don’t make it past the first year.

We're determined to change that.

Our Hope

Through sleepless nights of urgent and desperate searching for information about this little-known genetic disorder, we found something; a team in Ontario, Canada at the Ottawa Hospital Research Institute.

We found Dr. Bernard Thébaud and Dr. Sarah Wootton. 

By grace, they have found a possible cure for ABCA3 using AAV therapy . It’s a long way from usable, but finally, after months of tubes and tests and struggles in the NICU, there is some hope.

Our boys are now part of the AAVengers, Dr. Thebaud and Dr. Wootton’s program. There's a long path of funding, testing and praying ahead, but we are grateful for these wonderful people putting their brilliant minds to it.

Our Goal

Our goal is to fund and find the cure, the first in human infants. It will take $3m to fund the effort.

This will give Wylder and Oakley a chance at a future. A chance to grow up. To be kids. To play. To experience the world together.

There’s a mountain to climb and we believe we will do it. With your help we will get the funding.

The Funding

The funding will primarily go to safety studies, toxicology reports, manufacturing the cure and anything else Health Canada needs to approve and help us and the AAVengers team advance this. It will also help us with growing our campaign, PR and legal costs along the way.

If we can get this to market, not only will it cure our boys, but it will create a cure for hundreds of thousands of children living with this disease and all those born with this in the future.

Let's get the boys back together.