For New Westminster boy, Variety is ‘like family’
Among those who welcomed this week’s snow with delight, a 12-yearold New Westminster boy stands out. “Today, I put my jacket on and stood on the snow at recess. It was nice and soft so it didn’t hurt my ankles,” Johannes Jongbloets said. “Normally what I do is go out in my wheelchair.”
Johannes is one of the countless number of kids that Variety, the children’s charity, has helped out over the last half-century.
“When I get asked (how much Variety has meant to him), I don’t know what to say,” Johannes said. “They’re like family.”
Since 2010 alone, Variety has distributed more than $25 million to B.C. families and organizations.
In Johannes’s case, Variety stepped in when he needed emergency surgery to remove a pool of blood that had clotted in his spinal cord when he was just eight months old.
Crying inconsolably, Johannes was taken to Lions Gate Hospital, where a nurse noticed he’d lost feeling in his toes. In fact, he’d become paralyzed from the waist down.
He was airlifted to B.C. Children’s Hospital, where a surgery called laminectomy was performed after an MRI revealed the blood pooling in his spine. A laminectomy involves the removal (and subsequent reinsertion) of vertebrae, nine in the case of Johannes, to ease the pressure the blood clot had created.
“They’d never done a laminectomy on a baby before,” Johannes’s dad Jamie said. “The neurosurgeon found a journal with a case involving a baby in Germany.”
Post-surgery, Variety provided a custom-made body brace.
But during surgery, Johannes required three litres of transfused blood. The copious amounts of the blood-clotting protein factor VIII he was fed triggered on onset of hemophilia, his immune system treating the proteins like viruses. “His body began fighting it, that created the inhibitors that have been the bane of his existence ever since,” Jamie said.
Over time, the hemophilia targeted Johannes’s left elbow — he can no longer straighten his arm — and his ankles (thus the wheelchair).
In fact, Johannes was sidelined last week, kept from going to Fraser River Middle School, when he began bleeding into his elbow again after a long period of stability. To keep the pain at bay as much as possible, Johannes takes morphine.
Last week, Variety chipped in again, replacing Johannes’s rickety old wheelchair with a $5,600 stateof-the-art chair.