Four-year-old Grayson McGill has spent much of his young life at BC Children’s Hospital battling a rare condition known as Maple Syrup Urine Disease. His parents are hoping to make the hospital experience easier for other families by providing them with nutritious food.
Grayson’s fathers Chad Farquharson and Wayne McGill drop off boxes full of soup, snacks and fruit at the Intensive Care Unit twice a week, in a program they call “From Our Family to Yours”
“We had been given so much, and we had seen all these families who were in there who had nothing,” said McGill. “Nobody coming to see them, no food, nothing.”
Grayson’s body lacks an enzyme that would allow him to properly digest a part of protein known as leucine.
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.
“It’s microscopic amounts that we’re dealing with with him,” said McGill. “It would put him in brain swelling, it would give him brain damage or coma and he just wouldn’t survive and that could happen within a couple of days.”
Grayson visited BC Children’s Hospital 72 times last year. A flu-like illness also sent him to the Intensive Care Unit in April. His dads say that while friends and family often brought them meals during Grayson’s time in the ICU, they knew others weren’t as fortunate.
According to Lynn Coolen, program manager at BC Children’s Hospital Intensive Care Unit, families often put their own needs aside while their children are hospitalized.
“Oftentimes we know that families, because of the time they’re going through, sometimes don’t take care of themselves very well. What that means is they might not sleep very well, they don’t exercise and oftentimes they don’t eat.”
Grayson and his fathers are collecting funds online to help purchase food for parents. Each box, supplied with $20 to $25 worth of snacks, is given in the name of a family who has donated through the project’s Gofundme page.
“This was an opportunity to thank the people who took care of us, by passing it on,” said McGill.
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