Innisfailians have seized the Christmas spirit to once again financially support the family of five-year-old Batten disease child Brooke Aubuchon.
But the community's ongoing generosity follows the latest declaration from Alberta Minister of Health Fred Horne that he will not intervene in the heart-wrenching case to provide the family with provincial financial support.
“I haven't reviewed the particulars on this case. I am not the decision maker in this case, Mr. Speaker, but I would encourage the honourable member to advise her constituent of the appropriate process,” said Horne in the legislature on Nov. 27 during a grilling by Kerry Towle, the Wildrose Innisfail/Sylvan Lake MLA who has been passionately advocating on behalf of the family for most of 2013.
“I honestly don't know how the minister of health couldn't be familiar with this file,” said Towle, pointing out that various government committees have repeatedly denied financial assistance to the Aubuchon family. “I have sent him four letters. We have brought this up in the house three or four times. This has been in all the major newspapers including the Calgary Herald and Edmonton Journal and our local newspaper.
“The fact that the minister of health is now claiming that he knows nothing about a five-year-old who is dying when it has been on his desk for months is bizarre,” she added.
But the Innisfail community rose to the challenge of helping Aubuchon's family on Dec. 14 at the 4th Annual Fox and Hound Christmas Party, which featured a silent auction. At the end of the night it was decided to donate $2,500 to the Aubuchon family with the rest going to the Christmas Bureau.
“I chose Brooke and her family this year when I read a recent article in the local newspaper. I could not imagine the pain and stress the family is going through,” said Kristen Spatz, the night manager at the Fox and Hound who organized the event. “No one deserves to go through this once, let alone twice.”
The financially challenged family desperately needs additional funds for long-term treatment that would give the child a fighting chance to survive Batten disease, a rare, fatal, inherited disorder of the nervous system that killed her brother Alexander at the age of eight in 2011.
Aubuchon is continuing her recovery from trial surgery she received earlier this year in New York City. The cost of the surgery was picked up by the American hospital. Travel expenses were raised through several fundraisers in Innisfail and throughout the region. The provincial government did not make any financial contributions, citing its long held policy of not supporting out of country experimental treatments.
“It is kind of ridiculous actually,” said Aubuchon's mother Robin Brand. “We are not the only family in Alberta or Canada that has Batten disease, and if any other family wants to try and save their child or help another Batten child the government is not going to help. I think that is crap, especially when it comes to children.”
Brand said she has about $15,000 left for Brooke through previous local fundraisers, an amount that will cover travel expenses for the child's final two approved followup visits to New York City. However, she said it is not known at this time whether her daughter's surgery has succeeded in arresting the Batten disease. The child will undoubtedly require further long-term treatment and additional financial support, said Brand.
Towle pointed out to Horne in the legislature that he and his ministry have previously intervened in other urgent high profile cases, notably that of St. Albert's Aleena Sadownyk, a three-year-old child who desperately required treatment funding for Maroteaux-Lamy Syndrome, a rare disease that causes cellular waste to build up in her joints and around her heart, restricting movements and damaging organs. Last July, she was denied funding through the Alberta Rare Diseases Funding program but after a month of intense lobbying and public pressure the provincial government agreed to provide financial aid for the drug Naglazyme, which could cost between $300,000 and $1 million a year.
“You could do the exact same thing with Brooke or quite frankly the health minister could just fund it,” said Towle, who assailed the government at the same time for being “able to find money for outrageous expenses, bonuses to Alberta Health Services, (and) a million dollars to the Olympics.
“I just do not believe there is no ability for him to take one-on-one cases and see the value in them and work with them to find a solution.”
