Parent Brings Focus to Needs of Caregivers in ICU
November 12, 2015
Grayson has a rare disease that threatens life daily. His dads spent a lot of time by his bedside and have created a campaign to help feed parents facing the most stressful event of their lives — a child in intensive care.
“You are in the most stressful time, likely, of your entire life,” said Grayson’s father Chad Farquharson.
Eating and sleeping means leaving a child’s side. So caregivers with a little one in the intensive care unit or ICU, often live on coffee and hope.
At birth Grayson needed open-heart surgery, then he was diagnosed with a life-long disorder, the first child seen in B.C. in a decade.
Grayson’s rare conditon is called Maple Syrup Urine Disease (MSUD), a disorder named because children afflicted have urine that smells like maple syrup. His liver lacks the enzyme needed to break down protein, so food becomes a poison or neurotoxin, that causes brain swelling and eventually death. All protein intake must be managed down to the milligram.
“It’s kind of got this ‘fun’ name, but devastating outcome if not managed,” said Farquharson who tries to calculate the “perfect” amount of food for Grayson daily.
“We work every single day to make sure today is not the day he gets brain damage.”
Farquharson and his partner say they often forgot to eat and sleep when Grayson was in immediate danger, and they were learning the extent of the infant’s disorder.
“When they tell you that your child has a biochemical disease named Maple Syrup Urine Disease you can tell by their faces that you need to be devastated, but you have no context because you have no idea what these words even mean.”
The reality for the family now is often upwards of 72 hospital visits a year.
Grayson’s parents became so well acquainted with the ICU at B.C. Children’s Hospital in Vancouver they decided to make it better place for parents going through similar medical ordeals.
Grayson’s image is on each box, and people can support the effort through their Gofundme campaign.
Grayson’s parents hopes the food program helps others, and say their experience opened their eyes to a growing need for family support with so many children going through open heart surgeries and other radical medical procedures in the ICU.
“There are children now who will show up to kindergarten now who would have never existed before in human history.”
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