The Smith family of Athens, ON is happier these days with a short time to go until Charlie's surgery.
Credits: MEGAN BURKE/BROCKVILLE RECORDER AND TIMES/QMI AGENCY
TORONTO — What happens when an uncaring bureaucracy and a shamefully dysfunctional government turn their backs on the weakest, the most vulnerable, those most in need of help in their midst?
Passion happens, that's what.
Communities explode. They hurl themselves into action to show those granite-faced tormentors that not only do we not approve of their disgraceful lack of compassion, we'll show them by example how a caring society supports those who are desperately ill.
We saw it with Whitby, ONT, tot Liam Reid, who was refused sight-saving eye surgery in Detroit.
The community erupted. Fundraisers were organized. Money was raised.
We saw it when Brantford teen Erika Crawford needed life-saving surgery in Maryland and was turned down by our government.
Schools held dances. Total strangers dropped hundreds of dollars into the fund.
They raised $100,000, and she got her surgery, no thanks to OHIP.
But thanks to the love and concern and that great intangible quality — community spirit — that you find all across this province, outraged folk are voting with their hearts and sending a strong message to their government that they've got it wrong.
The latest story of love and caring is from Athens, ON, a small town north of Brockville.
Charles Smith, 22, suffers from the same severe, life-threatening disease Erika has — Ehler-Danlos Syndrome (EDS).
His sister Jessica Covey reports he's been confined to a wheelchair or bed for almost a year and can't sit up long without passing out and suffers dozens of convulsions every day.
Doctors here insisted it was all in his head.
It was only when Charlie turned to a world-renowned specialist in Maryland that he was taken seriously.
The specialist recommended Toronto doctors perform an upright MRI, which they failed to do.
It was only when he went to the U.S. for the test that the diagnosis was confirmed.
"Indeed, it was the only imaging that was possible for confirming the diagnosis, and it's what the U.S specialist used to confirm Charlie's severe case of Cranio-Cervical Instability," Jessica said.
They left Saturday for Maryland. Charlie will have surgery Monday.
None of this is thanks to OHIP, or the government.
They turned their backs on Charlie, just as they turned their backs on Erika and Liam.
You thought you had health insurance? Not if you have a rare illness and need treatment in the U.S.
You're on your own.
The Brockville community rallied. The local radio station put on a campaign. Schools had fundraisers.
Local stores put out fishbowls for donations. Boston Pizza had a fundraiser.
They raised $100,000.
Leeds-Grenville MPP Steve Clark says he's "disheartened" by the government's change of policy. Until recently, you only needed a family doctor to refer you for treatment in the U.S.
The government quietly changed the regulation recently. Now you need a specialist to affirm that there's no doctor in this province who can perform the procedure. And that gets into a clash of egos with specialists here.
With the provincial legislature shut down, there's no way for Clark to hold Health Minister Deb Matthews to account.
He wrote a letter to her last week, asking the question he would ask if the house were sitting.
"Why has Ontario's health-care system abandoned Charlie at his time of greatest need, leaving his fate in the hands of family, friends, neighbours and complete strangers?” he said.
“These people rallied to Charlie's side, but they think the government can do better — so do I."
Aren't we ashamed the government deliberately changed the rules so they could abandon young, ailing people like Liam , Erika and Charlie?
But let's take courage from what we've learned from this.
You can't always count on government to do the right thing, but you can always count on the goodness of ordinary folk.