Help with Medical Expenses for Bea

Hello friends,

As many of you know, our child Bea has a very rare medical condition that affects her whole digestive system. If we were to put it in basic terms, her body has difficulty absorbing nutrients from food. The condition is so rare that she is supported by TPN (IV nutrition) via central Hickman line for 12 hours a day, as well as a variety of medications and supplements to help her thrive. We spend a lot of time at SickKids with a specialist team making sure she is on track with her health. Bea is a really special kid, to say the least.

Something truly amazing happened recently that we’d like to share with you. Nolan came across a research study covering the effects of a mutation in the novel PERCC1 gene as a possible genetic cause for Bea’s condition. We shared it with Bea’s medical team, and they started to dig, contacting labs and medical teams from various PERCC1 studies around the world. We didn’t know where it was going to go.

We found out in December of 2024 that Bea's medical team was working toward getting her a certified PERCC1 diagnosis. In January, we received her official certified diagnosis, making Bea the only case in Canada with this condition. This diagnosis explains all of the why’s we’ve been searching for since she was born. It’s truly amazing – we are still in shock.

Even more amazing, there is a promising treatment for PERCC1 called Teduglutide/Revestive. This is usually only covered for people with short bowel syndrome in Canada and without insurance coverage it costs upwards of $300,000/year. We are so extremely happy to share that the medical team at SickKids and OnePath Canada have managed to secure insurance coverage through Canada Life and The Trillium Drug Program.

So why are we hosting a Go Fund Me?

Trying out this drug will also come with a variety of unpredictable medical expenses that are just part of testing out new treatments. While we are over the moon to have a diagnosis and insurance for the majority of the Teduglutide/Revestive, it would place enormous strain on our family to absorb thousands of dollars in a short amount of time.

With your donations, our family would be able to start this unprecedented new chapter without additional financial strain. If you are able to help, you have our endless gratitude.