North Delta resident Kirstin Hedberg describes her six-year-old son Logyn Booth as having the spirit of a warrior.
The Grade 1 student first became sick when he was two-years old. After invasive testing and several long hospital stays, the toddler was diagnosed with focal segmental glomerulosclerosis, a kidney disease. Logyn is currently on a waitlist for a kidney transplant, but his disease is lifelong.
“In a nutshell, his kidneys spill all the proteins off into themselves and scar themselves so they stop working,” Hedberg said.
Logyn’s condition impacts his ability to eat.
“His hormones are a little different so his body doesn’t say I’m hungry the way yours or mine does,” Hedberg said.
Because of this, he must be formula fed three times a day. Feeding supplies range from $400 to $600 a month. In addition, gastrostomy tubes, through which the formula is delivered directly into Logyn’s stomach, costs about $400 five times a year.
That’s where Variety – The Children’s Charity steps in to help cover the cost of the feeding supplies.
Hedberg, a single mother of three, calls the funding a blessing.
“They’ve been instrumental in helping me keep my little man on the planet,” she said. “It’s a lot of help. It’s a necessity of life but I wasn’t able to provide it for him.”
Through Variety, the family has also taken part in family fun days.
“We’ve gotten to meet other families that understand and are going through similar things,” Hedberg said. “Unless you live it, you don’t really know it.”
Kirstin Hedberg and her six-year-old son Logyn Booth. Photo credit: Kirstin Hedberg
Currently, Logyn is on hemodialysis, meaning he needs a machine to filter waste, salt and fluid from his blood four days a week. The procedure can only be done at B.C. Children’s Hospital, and as a result he is only able to attend school two days a week and is otherwise visited by a teacher in hospital.
Though he misses attending school, his mother said he maintains a sunny outlook.
“He is an amazing little young man. I call him my kidney warrior. You would never know to look at him that he is as sick as he is underneath his skin because he’s always got a smile on his face,” she said. ”People say, ‘How do you stay positive and strong?’ And I say, ‘Well, I follow his lead.’”
Variety B.C. Chief Executive Officer Kristy Gill said the charity aims “to inspire donors to help all children who have special needs in B.C. and the Yukon to fulfill their potential, so they can focus on the important things, like being kids.”
2017’s Variety Show of Hearts Telethon will take place on Feb. 12, airing on Global BC and online at globalnews.ca from 9:30 a.m. to 5:30 p.m.
Proceeds from the annual broadcast fund organizations like BC Children’s Hospital, Canuck Place and neonatal intensive care units across the province, and directly supports hundreds of families and children with special needs.
For Hedberg and her son, Variety’s funding has made a world of difference.
“It helps families be able to maintain their family status.”