For Variety, the kids always come first
Life can be hard enough raising three kids, the oldest of whom is just six, the siblings each two years behind the other.
Add cystic fibrosis (CF) into the situation and life takes on a whole new set of challenges.
But, for Nicole and Matt Robinson, it’s just part of life.
Two of their three children have the disease that makes it hard to gain weight, to live without pain from constipation and gas, to have no appetite and lots of nausea, to be always tired, prone to pneumonia and other respiratory symptoms — the biggest one of which is to simply breathe.
Among the many treatments, medications and other procedures Alysa, 6, and Kiana, 4, must endure daily are lengthy processes to clear their airways up to four times a day — often up to 90 minutes each time — to remove the mucus CF creates that blocks the airways.
It’s forced her two older girls to grow up in a way she and her husband would have preferred never to see, but it’s also left the girls so close because they simply get what each other is experiencing.
Last week, for example, meant another trip down to the hospital in Vancouver for more treatments.
Alysa’s been living with CF for more than four years now and she’s getting used to the regular stays, the pokes, the prods, the machinery, the coughing and the medical team that takes her through it every day for her usual two-week stay.
Kiana’s only been in the hospital once and, Nicole said, last time there were some problems with getting Kiana’s peripherally inserted central catheter (PICC) line into her tiny body.
It upset Kiana — and, this time, Alysa was worried her younger sister would have the same problem.
“She was up in tears the night before,” Nicole said, “worried Kiana’s IV would
keep popping out like it did before.”
There was a time when children with CF didn’t live for very many years but advances in medicine now see the average life expectancy between 30 and 40 years.
The girls will be featured on the Feb. 11 and Feb. 12 annual Variety Show of Hearts Telethon on the Global television network.
The family turned to Variety-The Children’s Charity when they moved to B.C. from Ontario and found themselves in a bureaucratic nightmare.
Their Ontario doctor had given them enough prescriptions to cover them for a while when they got to B.C., but not long enough for the required residency to get onto the B.C. medical plan.
For the system, it was a matter of rules and deadlines but, for the Robinsons, it was needed medications they couldn’t afford.
In a don’t-bend-the-rules way only bureaucracy can accomplish, it involved a B.C. doctor writing a prescription that Ontario would not cover, even though the family was still covered by its health insurance plan, because it was written in B.C.
Because they hadn’t lived in the province long enough to qualify for MSP, B.C. wouldn’t cover it, either.
Variety stepped in with a cheque for $4,800 to help the family get through.
The charity has helped in other ways, covering the family’s medical-insurance deductible — which tends to be eaten up with the first prescription filled every year, maybe not even a fully filled container — and in just being there for the Robinsons.
CF is a genetic disease and the Robinsons have discovered it exists on Matt’s side.
Because both parents must have the gene, Nicole speculates her family is composed of carriers, people with the gene who have never procreated with someone else with the same gene.
She said she learned just two weeks after Alysa’s diagnosis that she was pregnant with Kiana.
Audrina cane along two years later and amniocentesis was used to see if she also had the disease.
“She’s perfectly healthy,” Nicole said.
The regular stays in hospital mean the girls have lost a lot of time for playing with friends but they have also influenced the pair on a future career.
They both want to be nurses.
“You’d think that would be the last thing they’d want to be,” Nicole said, “but they said they want to help kids, too.
“In fact, when I called my husband to see what they’re doing today, they’re playing doctor, giving their stuffed animals PICC lines and CAT scans.
“They play what they live.”
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