It has been the best of times and the worst of times for Innisfail's Batten disease child Brooke Aubuchon.
During the Christmas holidays she received a huge delightful surprise from American-based Archie Comic Publications. The famed comic book company sent her a big box that was loaded with books and comics.
And then last week, a day after her sixth birthday, Brooke received a large framed artist drawing of herself with comic book legends Archie, Betty and Veronica.
ìIt was really a surprise, really, really awesome. Grandma was here when we opened it and we thought it was amazing that they did that for her,î said her mother Robin Brand.
But the young child was seriously ill at the end of January. Her Canadian doctors have also told the family she will no longer be able to fly to receive further treatment in the United States. And worse still, the family has now conceded the experimental treatment and surgery she received a year ago in New York City has not worked.
ìThere hasn't been any improvement,î said Brand of her daughter's overall current condition. ìIt (surgery) has pretty much slowed the disease down and that is pretty much it. We did the gene therapy (surgery) and apparently it hasn't worked.î
ìBrooke had a CT scan at Calgary's Alberta Children's Hospital to see if there was anything going on in her brain,î added Brand. ìIt showed a bit of shrinkage because that is what the disease does. It shrinks the brain. It hasn't stopped the disease whatsoever. That is what we went to New York for.î
Brooke was diagnosed in October 2012 with Batten disease -- a rare, incurable, fatal, progressive and inherited disorder of the nervous system that killed her brother Alexander on Sept. 20, 2011.
She was taken to the Calgary hospital on Jan. 30 after she endured five straight days of constant excruciating pain. Brand said her daughter was severely constipated and doctors ran her through a battery of tests but could not pinpoint the problem.
The child's condition improved and she was sent home with her mother on Feb. 3 but not before doctors told the family that Brooke should no longer fly in airplanes. The family still has additional testing scheduled in New York City.
ìI am going to have to coordinate with New York and with the doctors here for the rest of her testing,î said Brand. ìNew York can coordinate with her doctors at the children's hospital and do the followup testing. We have to figure something out. I will have to talk to them in New York.î
In the meantime, as her daughter's health continues to deteriorate, Brand is seriously looking at stem cell treatment for her daughter but it's only available in China.
ìThey are calling it a treatment for Batten disease and other diseases in one hospital in China and that is the only place you can go to now for stem cells,î said Brand, adding the issue of Brooke's inability to fly may have to be reconsidered. ìWe have to figure something out. We just don't know yet.
ìThey (Chinese doctors) are saying you have to do it six times before it makes a big difference,î said Brand.
In the meantime, the provincial government has not reconsidered its longstanding policy of not financially supporting Albertans who need out-of- country experimental treatment. Kerry Towle, the Wildrose MLA for Innisfail-Sylvan Lake, pressured the province several times last year to alter its policy, but the government has repeatedly rejected her demands and requests, as well as those from the family.
