Patient Stories
Ryan Williams – Former Patient Becomes Fundraiser
Ryan Williams was born with Klippel-Trénaunay Weber Syndrome, a rare malformation of the blood vessels in which benign tumours form within the blood vessel walls. In the 20 years since, he’s undergone 39 surgeries and paid countless visits to CHEO. At 12 years old, he and his family began a fundraiser for CHEO, and recently purchased an advanced laproscopic device that will help kids with his condition and others.
Micaela Egan – Research & Remission
Six-year-old Micaela Egan was diagnosed with leukemia after being admitted to CHEO at the age of four. Research has dramatically improved childhood cancer survival rates from 30 percent just 20 years ago to over 70 percent today. Happily, Micaela is one child who has benefited: two years after her diagnosis and treatment at CHEO, her leukemia is now in remission, and she’s doing very well.
Logan Irvine
Newlyweds Heather and Graham Irvine were thrilled to find out they were pregnant with a “Honeymoon Baby” but shocked to learn during an ultrasound that their baby boy would be born with a congenital heart defect. Logan has a complicated version of a condition called Tetralogy of Fallot, making his heart unable to properly function.
"The hardest part was coming to terms with the news that our baby would be born with significant challenges and not just get to be a baby.” Heather says. “It's a time when you want to be decorating a nursery and celebrating his life but instead you have even more uncertainties and fears than most first time parents have. You ride a rollercoaster of emotions. But you just find something within you that makes you go on."
Graham remembers that day all too clearly. “One second you’re there for an ultrasound, the next they’re showing you pictograms of the heart and talking about surgery. It’s like being hit in the gut again and again.” He found educating himself was the best form of therapy and is now a cardiology buff. “It’s become an infatuation with how the human body works,” he says. With Tetralogy of Fallot, typically the child has a narrowing of the pulmonary artery and valve. With Logan, the artery and the valve didn’t form at all. His right ventricle didn’t have blood pumping out of it. But how would they fix it?
The doctors told them Logan would require surgery within the first week of his life.
“It was amazing what they had to do to get the heart to pump effectively without being over or under worked,” Graham says. “Think of it like plumbing. They installed a shunt to bypass the artery and get blood going to the lungs.”
From the beginning, ‘Logan being Logan’ (a phrase coined by his doctors), wasn’t about to make it easy. He arrived a month and a half early on October 21st and after having the shunt put in developed a bowel condition and suffered from severe sleep apnea episodes where he’d stop breathing up to 14 times a day! He and his parents took up residence in the Neonatal Intensive Care Unit (NICU) at CHEO for two months and brought him home four days before Christmas. “Our best present ever!” his parents say.