For almost a year now the family of Brooke Aubuchon has been repeatedly trying to get the provincial government's attention that it desperately needs financial help to keep their five-year-old child alive.
Aubuchon is slowly dying from Batten disease, a rare, fatal, inherited disorder of the nervous system that claimed her eight-year-old brother Alexander on Sept. 20, 2011. She needs to go out of country for treatment because no medical help is available in Canada.
But the Tory government turns its back. It cites a long held policy of not financially supporting experimental out-of-country procedures, even though a trial surgery earlier this year, funded by a New York City hospital and travel expenses paid by generous donations from this big-hearted community, has shown promise.
But there are many more medical necessities and expenses awaiting the Aubuchon family, and now all they get from their government is a letter of gobbledygook from Health Minister Fred Horne.
For most of this year, local Wildrose MLA Kerry Towle has demanded answers from Horne on why the provincial government has made life a living hell for the family through its callous insistence to put bureaucracy before compassion. Towle has pressed him in the legislature and she has sent letters. Horne finally replied to Towle's third letter on Nov. 4, and the response was mind-boggling for its total disregard to the urgency the issue demands.
Horne lists a number of ministry programs, committees and regulations; complete with indecipherable acronyms – AHCIP and OOCHSC -- that gives the impression someone fell in a big bowl of alphabet soup. What is worse, there is a sense here that Horne and his ministry seriously believe the family and Towle have not looked at these options, which of course is utterly ridiculous.
The minister has passed the buck here to a battery of bureaucrats who are paid to follow rules. He has the power to bypass this stifling process but he chooses not to.
This is a matter of life or death, an issue that demands the provincial government push aside bureaucracy, rules, regulations and committees for common sense and human decency. It is an issue that cries out for compassion, which the province is proving incapable of seizing.
Towle has asked Horne to see and talk to the Aubuchon family. There has been no response. But if Horne or any of his staff met Brooke and her family they would see the human faces behind the applications for support that have faced numbingly grey lines of rules and regulations. The minister would see a real family, financially challenged yes, but decent people paying bills and seeing to it that young Brooke has the best life possible in spite of her seemingly desperate obstacles and uncertain future.
But so far, there is no indication the minister is willing to do that.
That is unfortunate. Horne is missing an opportunity here to experience an indomitable spirit that is so much part of the Albertan identity, a child and family struggling in a land that holds values of strength and perseverance to succeed above everything else.
The Aubuchon family deserves that today, and so much more.
