Mending Mikayla
It’s a very stereotypical Canadian thing to brag about our healthcare system. Our public healthcare is something we’ve lorded over our neighbours to the south for quite some time and many an essay has cited universal healthcare as a part of the Canadian identity.
So, what happens when that vaunted system fails you?
What do you do when the care you need is not available in Canada and Alberta Health may or may not cover the costs to receive treatment elsewhere?
What would you do if it were your child in need of that care?
The simple answer is you do whatever you can to get her the help she needs. The not so simple answer is try to wade through a mess of red tape and bureaucracy to apply for funding, while simultaneously trying to find a way to pay a $210,000 surgery bill.
This is the problem that Wetaskiwin’s Curran family is facing as they try to raise money so 11-year-old Mikayla can receive the brain surgery she needs to relieve the painful symptoms caused by a pineal gland cyst.
Mikayla’s symptoms appeared a year ago. An honour roll student at Norwood School and a keen swimmer, Mikayla is no longer able to participate in the activities she loves most, due to a nasty list of symptoms, including daily headaches, sporadic double vision, sporadic loss of vision, fatigue, anxiety, trouble concentrating, extreme mood swings, and ringing in her ears.
“What we’ve found in our research is that lots of people have pineal cyst, small ones, and very seldom do they cause problems,” explained Mikayla’s father, Sheldon.
“Size doesn’t necessarily correlate to symptoms, but generally the bigger it is, the more problems it causes because it’s taking up space that shouldn’t have anything in it.”
When Mikayla first experienced a loss of vision, her parents took her to Stollery Children’s Hospital in Edmonton. An MRI scan revealed a 15mm pineal cyst deep in her brain.
Tragically, the Currans have been toldby a number of specialists that the only procedure available to remove the cyst in Canada is invasive and too dangerous. In the meantime, Mikayla has been trying to manage her symptoms, seeing various doctors, from neurosurgeons to psychologists, and each trying to pass the buck on to another specialty.
“It was like a vicious circle,” recalled her mother, Angela. “Nobody’s taking ownership. Nobody’s taken us on and said ‘we can’t do it here, but let’s send her somewhere where they can help.’ “
“She can’t keep living like this. She’s crying and saying ‘mom, please help me.’ It’s been a year of hell.”
Enter Dr. Dong Kim, chief of neurosurgery at University of Texas Hospital.
"He said ‘I absolutely, 100 per cent think I can help you and my office will do everything they can to make that happen,'" said Sheldon.
“It’s reassuring that after a whole year of doing this round-and-round and all the mounting frustrations because of our systems to finally have someone say ‘yes we’re going to help you.’ It’s incredible.”
“The surgeon has done operations on adults with cysts a quarter of the size [of Mikayla’s],” added Angela. “He was quite surprised and couldn’t believe that they don’t do that [surgery] in Canada.”
Dr. Kim routinely performs surgeries to remove pineal cysts and is confident that there is a greater than 95 per cent chance that Mikayla will come out of surgery completely symptom free. She will be heading south in June to receive the treatment.
The only caveat: the surgery itself will cost $210,000 plus the associated costs of travel and living in Texas for three weeks while Mikayla recuperates.
The Currans have begun the long process of applying for funding from Alberta Health, but aren’t holding their breath for results; they know of least two other Alberta cases of symptomatic pineal cysts whom the province has declined funding.
The family has reached out to the global community via the Internet to ask for help.
“It’s the hardest thing to ask for help, but when it’s your child you do what you have to,” said Sheldon.
“We’ve never been on this side before. Being a business owner, I was always the one doing the donating and not really thinking about it. Now, being on the other side of the fence, it’s very humbling.”
The fundraising efforts have only been going on for the last week, but the Currans said the response they’ve received has been overwhelming.
“The whole community has been amazing,” said Angela. “Not just friends and family, but complete strangers.”
For Mikayla, she’s a bit scared for the upcoming surgery, but is looking forward to being healthy again and having her life get back to normal.
“[I want] to swim, I miss being with my friends,” she whispered.
(note: the Currans were able to fundraise well over the needed $210,000. Excess monies were donated back into the community.)
Sarah O. Swenson/Wetaskiwin Times
2014