WATCH: As we approach the Miracle Network Telethon this weekend for Children’s Hospital, it’s time to take a look at some of the miracles your donations fund
You would never know Grayson McGill beats the odds every single day, but his dads remember exactly how far their son has come.
“The one thing that I think we’ve both really learned with him is that ‘live in the moment’ feeling, because we really know that’s what we have,” said father Wayne McGill.
Dads McGill and Chad Farquharson live with the reality that four-year-old Grayson has a rare metabolic disorder known as Maple Syrup Urine Disease, which is named after the sweet smell of an afflicted child’s urine.
The condition prevents the body from processing certain amino acids.
Miracle Weekend 2015: How to watch and donate
“Every day we work to make sure today is the day he doesn’t get brain damage,” said Farquharson. “That weight is always with us.”
Keeping Grayson’s brain healthy means sticking to the strictest low-protein diet that controls the exact amount of leucine–the amino acid most toxic for the brain–he ingests.
Meals are planned via spreadsheet, with their BC Children’s Hospital dietitian constantly monitoring their progress.
Last month, a minor virus was enough to send Grayson’s leucine levels sky-high. He was in the ICU for five days. Fortunately, he came out of it with no brain damage.
In between his numerous visits to Children’s Hospital–72 times last year alone–Grayson lives the life of a regular preschooler, which is exactly what Chad and Wayne love to see.
“I think physically he’s a miracle. I think for our family he’s a miracle,” said McGill.
“He regularly blows us and everybody away with his resilience, his stamina, his energy,” said Farquharson. “I’m in awe of him just being him.”
You can watch the 28th Annual Miracle Weekend for BC Children’s Hospital on Global BC this weekend, May 30 and 31. You’ll see how your donations help purchase equipment and fund research that helps save young lives.
-with files from Elaine Yong
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