The wait is suddenly over.
Brooke Aubuchon is going back to New York City on Feb. 19.
The four-year-old child, whose courageous battle against Batten disease has won the hearts of hundreds and even thousands of citizens in Innisfail and throughout central Alberta, will undergo potentially life-saving surgery on Feb. 26 as part of a revolutionary clinical trial that could lead to a cure for the rare and fatal disease.
The family was notified with the good news through an email from the hospital on Jan. 30, three days after returning from a four-day visit to New York City for an assessment. The news this week stunned the family as they were told a decision for their child could take up to a month.
ìIt was very good news. We are ecstatic,î said Brooke's dad Darcy. ìWhile I am happy I am also a little nervous because it is evasive surgery.î
Darcy said Brooke will first have to go through another round of tests when she arrives in New York City. Last week during her initial assessment Brooke had to have blood tests, an MRI, and an eye exam to determine whether she qualified for the clinical trial.
ìIt has to be safe for her. They have to retest her,î said Darcy.
Brooke's journey began last October when she was first diagnosed by doctors at Calgary's Alberta Children's Hospital with Batten disease, an inherited disorder of the nervous system that claimed her eight-year-old brother Alexander on Sept. 20, 2011. There are less than 500 current cases of Batten disease world-wide and only 10 reported in Canada.
The current clinical trial in New York City is considered the last chance to save Brooke's life.
Darcy said the entire family - including himself, Brooke's mom Robin Brand, older brother Ethan and little sister Isabella, will be going to New York City with Brooke on Feb. 19 to stay with her until surgery day.
ìWe want the whole family there on the day of the surgery,î said Darcy, who will return home with Ethan and Isabella after the operation while Robin will remain with Brooke. ìThere is no strength like family.î
Meanwhile, the good news from New York on Jan. 30 has also thrilled friends and supporters of Brooke who have worked tirelessly in recent weeks and months to help the family.
ìWhen Robin called me with this fantastic news I was beyond thrilled. When I hung up the phone I was so happy. I was laughing and crying at the same time,î said family friend Jodi McCutcheon, a Red Deer mother who has raised thousands of dollars for the family through her sock monkey doll campaign. ìWe went on our way to pick up my older son and once at the school spread the word of the good news. Everyone we saw was thrilled over this fantastic news. This is a huge step for Brooke, her family, and children with Batten disease everywhere.î
McCutcheon's fundraising has greatly aided the financially-challenged family as the provincial government will not help with any of the costs of Brooke's current treatment, which is not available in Canada, as it is considered experimental. Since the story of Brooke's plight was first published by the Province in early January citizens of Innisfail and the region have rallied to donate more than $15,000 to the family, a significant portion coming from McCutcheon's sock monkey doll campaign.
However, while the amount raised so far has been impressive it will not go near enough to help the family through the next steps of Brooke's treatment, said Darcy.
He said the family spent about $5,000 to get to New York for the four days of assessment in January, and now Brooke and her mother will have to stay in New York City for at least six more weeks beginning on Feb. 19.
ìWe obviously need a lot more. Unfortunately that is the reality of things,î said Darcy, a jet boat builder at Innisfail's FireFish Industries. ìWe know the money is going to run out. We have to tread carefully.î
On Feb. 1 friends of the family are organizing a silent auction at Innisfail's Fox and Hound Sports Pub. On Feb. 2 and 3, McCutcheon will be in Innisfail for the pee wee hockey tournament where she will sell more of her sock monkeys to help Brooke and her family.
