Kasen's Story

 

Most new parents you talk to will tell you how long it’s been since they’ve slept through the night. But until just recently, Dayna Andrushko hadn’t had a full night’s sleep in over 12 years!

 

That’s because all through the night since her son Kasen was born, Dayna has stayed half awake, listening for sounds from his room. Sounds that might tell her that his pump has malfunctioned. The horrifying sounds of a seizure. 

 

You see, Kasen was born with a rare condition called Glycogen Storage Disease. The disease is so rare that only 10 people in all of Manitoba have it. 

 

When he was just 9 months old, Kasen began having seizures. Doctors at Children’s Hospital diagnosed him with Glycogen Storage Disease, a condition where Kasen’s body can not store the glycogen he needs to maintain his blood sugar levels. If his blood sugar level is not maintained, he could go in seizure and sustain organ damage.

 

So ever since he was 9 months old, this brave boy has endured 10 pokes a day to check his blood sugar. And a night-time pump that maintains his levels. 

 

And that’s why Kasen’s mum has spent every night lying awake, vigilant that the pump is working and her son is safe. 

 

As you can imagine, it’s not always easy to find funding for research into rare conditions like Kasen’s, when it affects such a small number of people. That’s where generous Manitobans like you come in. 

 

Right now, Kasen is part of a special clinical trial at the Children’s Hospital Research Institute of Manitoba to test a brand-new treatment for his disease. And this research was made possible by donors like you.

 

Our own Dr. Cheryl Rockman-Greenberg and her research team discovered that a slow-release cornstarch could replace the constant feeding through the pump. 

 

This isn’t the ultimate cure which Dr. Rockman-Greenberg and her team are still working on. But it is an important treatment that has already fundamentally changed life for Kasen and his family.

 

For the first time in 12 years, Dayna can sleep peacefully through the night, knowing her son is safe. That’s because of donors like you – and your commitment to excellence in research right here in Manitoba. And to the children and families we serve. 

 

Despite Kasen’s condition, nothing has stopped this go-getting kid from achieving great things. He plays competitive hockey and soccer, and loves to golf, bowl and ride his bike. 

 

No parents want to hear the terms “life-long” and “life-threatening” when it comes to their child. But Children’s Hospital and our staff and supporters have been here for Dayna and Kasen since he was born. And we’ll be here celebrating with him on that bright day when a cure for his condition is found, right here in Manitoba!