It’s always amazing to see our children grow up, but Michelle and Tony thought they may never get the chance to mark meaningful milestones with their son, Greysen.
He has needed HSC Children’s Hospital since he was a newborn and will continue to work with specialists there until he’s an adult.
“Children’s Hospital will continue to be a frequent part of our lives,” says Michelle.
“We do know it’s always there for us when we need it. We are forever thankful for the staff there.”
In November of 2010, when Greysen was first born, Michelle remembers feeling like something was off.
“They handed him to me, and I just knew something wasn’t right. I could just look at him, his features and he wasn’t crying,” Michelle said.
When he was six-weeks-old, Michelle and Greysen travelled from their local hospital in Morris, Manitoba.
“He was having a nap and I was kind of watching him and thinking – does his breathing always sound like this?” says Michelle. “I was second guessing myself. I wasn’t sure what was going on. But then I unzipped his onesie and I could see his rib cage collapsing with every single breath.”
Doctors told Michelle that Greysen needed to go to HSC Children’s Hospital right away.
“The doctor got into the ambulance with us, which now I know only happens if the child may not make it,” says Michelle. “The doctor said, ‘just hold him.’”
Once arriving in Winnipeg, the staff at Children’s Hospital worked quickly to save Greysen’s life.
“I was holding him and all of a sudden one of the nurses just grabbed him and ran,” Michelle said. “He stopped breathing and was resuscitated twice in Children’s Emergency. And once he was stable, they told me it wasn’t good.”
Doctors initially diagnosed Greysen with pneumonia and bronchiolitis, and later also respiratory syncytial virus (RSV). The newborn spent three weeks in the hospital battling infection.
On life support in the Pediatric Intensive Care Unit (PICU) for twelve days, Greysen had to be resuscitated twice more; each time, Michelle and her husband, Tony were told to say goodbye to their son.
“The whole time was such a whirlwind, and we didn’t know what was going on and he was just holding on so hard,” says Michelle.
Thankfully, Greysen did pull through and once he became more stable doctors began further testing, suspecting he may be dealing with more than just the respiratory infections.
Genetic tests found Greysen is missing part of his seventh and eighth chromosomes, which is extremely rare as only one other child in the world is missing their seventh chromosome, and Greysen is the only child known to be missing his eighth chromosome.
There’s no official name for the diagnosis, but it led to hearing loss, developmental delays and distinctive differences. Greysen’s hearing loss was rectified with bone-anchored hearing aids and specialists have continued to support him. Greysen began a new treatment plan at HSC Children’s in September of 2023 and Michelle says he is doing is doing fantastic.
“I’m not sure what we would do without the hospital,” says Michelle due to the Greysen’s diverse and complex medical needs.
“I think that a lot of people don’t realize how much we have here; how many different specialists we have and what they can all do and how amazing and quick they are.”
Now, Greysen is a teenager who loves being active and traveling and is doing well in school. Michelle, Tony and Greysen’s sister, Kaylee, are deeply grateful for the hospital’s support.
Greysen started speed skating in 2020 and absolutely loves the sport. He’s participated in the Special Olympic games, bringing home three silver medals in 2022.
Plus, he’s an ambassador for other kids like him at Speed Skating Manitoba’s annual Skate the Oval event to fundraise for children in hospital.
You can join Speed Skating Manitoba to help kids like Greysen Sunday, January 28 from 2:00 PM – 5:00 PM at the Susan Auch Oval (999 Sargent Avenue, Winnipeg).
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