[projekktor id=’12517′]
Improving the quality of their son’s life is all Sarah and Phil Cardozo want. They know a risky surgery in the U.S. won’t cure him of a debilitating disorder. But it might make it a little better. And though turned down by the province for funding, they’re turning to the public for support.
The Cardozo boys love to rough house — even dad. It’s one of the things they all have in common. Another trait the boys share is less pleasant. Neurofibromatosis — commonly called NF. It started with Phil — the boys father: “He went undiagnosed pretty much his whole life until he was in his late 20’s — until after we had Marcus.”
Phil periodically develops bumps or tumours above or just below the skin. They can be removed, but often grow back. 9-year old Marcus has markings on his skin, called café au lait spots. 4-year old Jonas has tumours growing on the optic nerve. Regular MRI’s keep tabs on tumour developments. And middle son Michael has yet, another version: “At birth he had a really unusual café au lait spot, all the way up his thigh, all the way around his torso.”
By 9-months, Sarah noticed her son’s left leg and foot looked larger, thicker: “He was sent for an MRI and that’s when the confirmed he had a plexiform NF in his lower pelvic region which was affecting growth in his leg.”
Plexiform NF is more complex. It spreads through the body, wrapping around nerves and organs. And in Michael’s case, it severly damaged the growth pattern of his left leg: “His leg looked like a kick stand. He would just drag it along with him. And over time it’s caused him scoliosis. He struggles with bladder control problems now that the tumour has spread more. So he has problems with that.”
It’s also caused the 6 and a half year old significant pain: “If I bump it on something — Iike the stairs over there. And I start crying.”
He’s endured femur surgery to shorten his left leg — 15 cm longer than his right one. He’s also endured a leg brace and shoe lifts: “It’s difficult as a parent when you see your child struggle like that.”
There is no cure for NF — and no surgical treatments in Ontario for plexiform. However, a U.S. surgeon has had success with partial tumour removals, and believe’s Michael is a good candidate. However, the province doesn’t agree — and won’t cover the costs: “Partially removing it is so beneficial for Michael. I mean if that gives him an opportunity to have 6 or 10 more years before this monster of a tumour consumes his body and causing him pain and heart ache for the rest of his life, that’s worth it.”
The Cardozo family won’t be swayed by the province. They are doing some major fundraising so Michael can have this surgery. There are a number of events planned as well as a crowd funding program.
