On Dec. 5, 2008, at 6: 59 p.m. Megan Thomson was born at Royal Columbian Hospital. She weighed six pounds, and three ounces, but there was something slightly off, something very tiny that would have an immeasurable impact on her future.
The clues were there: Megan was as floppy as a rag doll, and she had a weak cry.
"We thought from the trauma of the birth, she's probably just tired," says Megan's mom Cindy, who lives with her husband in Burnaby's Cariboo Heights neighbourhood.
Then came the diagnosis: Megan had Prader-Willi syndrome, a congenital disease with no known cure, affecting only one in 15,000 people. The disease is caused by missing active genetic material from the paternal side for one particular chromosome.
"It was completely new to us," Cindy says. "I had heard of it before, but I didn't really know what it was. My husband did a lot of research on the Internet. I couldn't handle it."
The first phase of the syndrome is often characterized by low muscle tone, a weak cry and problems breastfeeding. The disease affects the hypothalamus, a small area at the base of the brain responsible for regulating fluids, puberty, emotions, pain and appetite. No one really knows why or how the genetic problem affects the hypothalamus, but Prader-Willi syndrome also causes cognitive disabilities, delayed motor development, stunted growth, small hands and feet, underdeveloped muscles and an insatiable appetite, which can lead to morbid obesity.
Megan developed her appetite around age two, and she always feels hungry, no matter how much she eats.
"My husband and I were using a knotted tea towel around the fridge to lock it up at night, and just last week she's figured out how to open it and get in there. We wake up in the morning, and she's proud of herself, she ate four or five yogurts," Cindy says. "That was not good. We'll have to get a lock for the fridge."
Kids with Prader-Willi syndrome are often on calorie-restricted diets for life, Cindy explains. There are even problems with Megan eating non-edible things, and Cindy has to watch her daughter in grocery stores.
There are also the behavioural problems.
"Meltdowns are bigger than what you see for the typical four-year-olds, and they tend to last a bit longer," Cindy says.
Self-harm is also an issue, and Megan was ripping out her curly hair for a while. Since delayed motor skills are the norm with Prader-Willi, Megan didn't start walking till she was three, and that's where Variety-The Children's Charity came in.
The family's social worker suggested they contact Variety, which raises millions each year to help British Columbian children with disabilities. Cindy contacted Variety, and the organization agreed to supply Megan with a walker.
"The walker was amazing," Cindy says. "She would have eventually (started walking), but that sped it up big time."
Cindy has multiple sclerosis and uses a wheelchair to get around, so Megan doesn't see her mom walking and can hitch a ride on the chair if she's tired. The walker helped Megan balance better, so she can go outside and follow the other kids out exploring.
"Before, she'd bum scoot, basically, so she wore out a lot of pants," Cindy says.
Variety provided the walker, which normally would cost about $2,300, on the condition that the family donates it to charity once Megan outgrows it.
"In our family, we couldn't afford a walker like that," Cindy says.
On Feb. 16 and 17, Variety's Show of Hearts Telethon will be broadcast on Global B.C., and Megan's family will be featured in the telethon.
Every year, Variety broadcasts the Show of Hearts telethon to raise money for children in B.C. Last year, the organization raised nearly $7 million, with more than 1.5 million viewers tuning in. This year's show features footage of big name performers - Rihanna, Michael Buble, Paul McCartney, and Justin Bieber, for example - and segments with families, like Megan's, who have been helped by Variety.
"Variety is a great cause, I know for me, putting our name out there, we'll help out," Cindy says. "Variety is helping so many families, you see the difference it was making."
To see Megan's story, tune into Global on Feb. 16 and 17.
