Hey there, time traveller!
This article was published 18/7/2016 (370 days ago), so information in it may no longer be current.
In the bedroom of 13-year-old Piper Coffin is a necklace more than a metre long made up of hundreds of "bravery beads" — 131 red ones (to signify the number of blood transfusions she’s endured), a handful of little planes (to signify flights taken to Toronto from Winnipeg for hospital stays), numerous other colours and shapes to represent the many treatments Coffin has gone through, and one blue heart for the day she got her liver transplant.
The necklace is a bittersweet keepsake from a time when the majority of Piper’s life was spent in and out of hospitals due to Alagille syndrome, a genetic disorder that prevents organs such as the liver, heart and kidneys from growing properly.
But on a cloudy July morning, the petite teenager is smiling brightly, her curly blond hair up in a ponytail as she plays on her iPad in her family’s Assiniboia-area home. She’s quiet and shy, but gradually warms up, admitting to her lack of exciting summer plans before heading back to school for Grade 8 — something that seemed like an unlikely event just two years ago.
Piper was two months old when she was diagnosed with Alagille syndrome. At the time, doctors weren’t sure if she had a type of cancer or some other disease, so she was sent to Toronto’s Hospital for Sick Children, where a doctor recognized the symptoms and made the diagnosis. At the age of one, she was put on a gastrostomy tube (a port that goes into the stomach) that fed her and kept her alive. When she was two, her father, Hank Coffin, says Piper was still so small he was able to cradle her in one arm.
Piper’s liver had been working at about 20 per cent , but when she was 11, she had a low-level fever for a couple of weeks that evolved into complete liver failure.
"It was weird — she’d be totally fine during the day, and then at night her temperature would go up to 99, 100, 101 (F), and then the next day she’d be fine," says Coffin. They went to the hospital and discovered her liver was failing; with 20 minutes’ notice, Piper and her mother, Cynthia Jessop, were medevaced to Toronto.
"Everything went so quick," says her father, adding Piper seemed totally fine at the time. "She was as perky and happy and healthy as she is right now. She walked to the ambulance."
Piper was added to the liver donor list in Toronto. Her dad and her fraternal twin sister, Callysta, who had joined Piper and her mother in Toronto, were sent back to Winnipeg. But things took a downward turn. Coffin and Callysta were called back and told to prepare themselves for the worst.
"She was an emergency situation; she went into a coma... after her liver failed, her kidneys failed. They didn’t think she was going to survive," says Jessop.
Just two weeks later, there was a liver available for Piper and the transplant was performed in August 2014. It was another four months in and out of critical care before she was able to return home to Winnipeg.
However, she rejected her liver (not uncommon in the first year after the operation) and was forced to go back to Toronto for another month in January 2015.
During that time, costs were escalating — food, lodging, transportation back and forth to Toronto from Winnipeg — and her parents’ inability to work full time took a toll.
That’s where the David Foster Foundation stepped in to help. The family’s social worker first connected them with the foundation, which then paid for all the non-medical costs (including food, airfare and the rent for their room at Ronald McDonald House) for several months while Piper was in the most critical portion of her recovery.
"We just came alongside them to help them with financial assistance, because most of our families that are referred to the foundation are faced with a financial situation where the parents will lose one or more jobs because they have to go with their child," says Mike Ravenhill, CEO of the David Foster Foundation. "Piper had multiple blood transfusions and about nine surgeries in 2014-15. It took a lot out of the family and was very costly, so our foundation helped support them and they were able to remain in Toronto to support one another.
"One of the things we try to do with this foundation is to keep the families together during these stressful times... to us, that’s the most important thing," he says. "If you’ve ever experienced a sick child, you just want to be beside them — you don’t really care about work, you don’t care about bills, you just want to be with them."
The David Foster Foundation, a non-profit, Vancouver-based organization that helps families with children in need of organ transplants by covering non-medical costs, will bring its annual miracle gala and concert to Winnipeg’s MTS Centre Sept. 24 to promote organ-donor awareness. In Manitoba, the registration rate for organ donors sits at just two per cent.
"One of the big reasons we chose Winnipeg is the province has one of the lowest organ-donor rates in the country. We have the ability to change that with awareness and education," says Ravenhill. "Another reason is that all children requiring transplants, with the exception of kidney transplants, have to leave the province to receive medical treatment, which then, of course, creates the burden."
Post-transplant life isn’t exactly easy for the Coffin family — "It’s just a new set of problems," says Jessop — but it is a substantial improvement. Since getting her new liver, Piper has grown about four inches and her appetite has increased tenfold. Her parents are so grateful an organ was available from someone who had registered to be a donor prior to their death.
"Without the kindness of strangers, she wouldn’t be alive today," says Jessop. "I’m very overwhelmed that someone on the worst day of their life, they saved our daughter."
"In this case, it’s a great story. We, unfortunately, don’t always have the best stories," says Ravenhill. "I’ve been with the foundation 27 years, and I’ve seen too many children not make it, and that’s what gets me digging in every day, gets me up early and keeps me awake at night."
More information about the David Foster Foundation Miracle Gala and Concert is available at davidfostermiracleconcert.com. To learn more about organ-donor registration in Manitoba, visit transplantmanitoba.ca.