With no government or corporate support, Robin Brand is taking her little four-year-old dying daughter to New York City this week in a desperate bid to save the child's life.
The Innisfail mother leaves with the knowledge that citizens of Innisfail and throughout Central Alberta have opened their hearts and wallets to help Brooke Aubuchon in what could be her final chance to overcome the same illness that claimed her eight-year-old brother Alexander just 14 months ago.
Brooke, as did Alexander, has Batten disease, a rare, fatal, inherited disorder of the nervous system. Alexander died of the same disease on Sept. 20, 2011. The gene that causes Batten disease must come from both parents. Alexander and Brooke had different fathers, which makes the statistical probability of both siblings acquiring Batten disease almost unheard of in the medical community.
Since Brooke's story was first published in the Province earlier this month, citizens across the region have donated thousands of dollars to help the financially challenged family, which has seen their requests for help rejected by the provincial government and corporations on grounds they are seeking relief through a clinical trial that is being run outside the country.
But ordinary citizens, most who have never met the family, have stepped up by either sending donations or purchasing sock monkey dolls made by Red Deer's Jodi McCutcheon, Brand's former junior high school classmate.
ìI don't know anything about them but I thought I could help out this way,î said Cathy Edwards, co-owner of Red Deer's Country Cupboard store, who purchased 15 sock monkey dolls. ìIt is because of the grief they have gone through recently and now they have to go through it all again.î
As the days count down to the departure date to go to New York City, Brand is busy making last minute preparations.
ìI am overwhelmed, nervous and excited at the same time,î said Brand.
As of Jan. 23, the mother and daughter, along with a family friend from Calgary, will be staying at Ronald McDonald House in Manhattan. Brooke will be tested at Weill Medical College of Cornell University. She will be assessed to see if she qualifies for a clinical trial of gene therapy treatment.
Brooke was first diagnosed with Batten disease last October. Since that time her condition has worsened.
ìHer walking ability is getting worse,î said Brand. ìBut her eyesight is good. Usually it is the first thing that goes. Brooke is lucky. Her eyesight, despite just getting glasses, has not been affected.î
Robin and Brooke will be in New York City until Jan. 27. By the time they are ready to return to Innisfail they hope to get an answer on whether Brooke will qualify for the clinical trial.
ìI hope so. It depends on how fast they get the test results back,î said Brand.
In the meantime, family and friends in Central Alberta are continuing their efforts to raise money for Brooke. Although more than $15,000 has been raised so far, the family will likely need much more to get them through Brooke's plight, especially if she qualifies for the clinical trial and has to go back to New York City several times for repeated treatment.
McCutcheon has so far taken orders for 172 sock monkeys, which sell for $20 each. The monkeys have brought in more than $3,530 for Brooke, including ones that have been sold on on-line auctions.
ìI am very grateful for the patience people have with when it comes to getting their monkeys. People have been very understanding that I am only one person and this will take some time,î said McCutcheon, who also raised an additional $913 through another on-line auction of various donated items. ìI am working constantly on orders and have completed 36 monkeys since the campaign for Brooke began.î
As well, the grassroots campaign to help Brooke and her family has also seen a further $350 from Red Deer's Melissa Snideman, who created a quilt and sold it in an online auction. Sylvan Lake's Scratch Homemade Cakes and Sweets auctioned off a cake for $175, which is going to Brooke as well.
"I am overwhelmed, nervous and excited at the same time."Robin Brand, mother of Brooke
