INNISFAIL – Brooke Aubuchon is now with the angels.
The nine-year-old Innisfail child, who touched the hearts of thousands of Central Albertans over the past five years with her courageous battle against Batten disease, died Saturday afternoon, Nov. 4, at the Innisfail Health Centre.
“My Brookers gained her wings today,” said Brooke's grandmother Judith Hutlet in a Facebook post last weekend. “My baby girl is gone.”
Tragically, Brooke's death follows the fate of her brother Alexander who passed away at the age of eight on Sept. 20, 2011. He also died of Batten disease, a rare, incurable, fatal, progressive and inherited disorder of the nervous system. Brooke was diagnosed with the disease in October of 2012 after she began to develop vision problems and seizures.
“My heart is broken. I don't know what to do. I don't know what to do without her. The family is not doing very well right now,” said a devastated Hutlet to the Province of Brooke's father Darcy, brother Ethan and mother Robin Brand. “It was so unexpected. She was doing really well and all of a sudden just one big seizure and it got her.”
When Brook's plight became publicly know in early 2013, Innisfailians rallied to help her financially challenged family, who had been shut out from provincial help because the government policy of the day was not to fund out-of-country experimental services or clinical trails. Thousands of dollars were raised from all over Central Alberta to help the family, including $3,435 from Red Deer's Jodi McCutcheon, who created and sold sock monkey dolls to help Brooke.
With that help from Innisfailians Brooke was able to go with her mother to New York City's Weill Medical College of Cornell University to have potentially life-saving gene therapy treatment, part of a revolutionary clinical trial.
While the treatment appeared promising at first, Brooke's overall condition began to deteriorate by the end of the year. It was back to square one.
Earlier this year the family was dealt a major setback in terms of hope for Brooke when doctors declined to treat her with a new therapy that looked promising for Batten disease patients. However, Brooke's illness had progressed too far for the treatment to be a viable option.
“Brooke didn't qualify because she was too far gone. That is what they said. Who is to say it wouldn't have worked or would have?,” said Hutlet.
In the meantime, Brooke's health continued to worsen. She was bedridden, and according to Hutlet, hardly smiled anymore. But the family never gave up, even last weekend when members had to rush her to the hospital.
“She was having a lot of difficulty breathing and I kept at them (hospital staff) and said she needed to be in the hospital,” said Hutlet, adding Brooke was later discharged to go home but died in the mid-afternoon. “Darcy and I tried to save her. I gave her CPR and the guys (paramedics) showed up and she was already dying.”
Although Hutlet and the rest of the family are devastated by Brooke's death the grandmother acknowledges the ongoing stories through the media about the child's plight did raise awareness of the deadly Batten disease, and because of that, advances were made to find a cure that could save the lives of countless other children.
“Hopefully the tests and treatment they are doing will save other children. But it was just a little too late for Brooke,” said the grieving grandmother.
She said last weekend that funeral arrangements for Brooke were being made and will be announced this week.
Judith Hutlet, grandmother of Brooke Aubuchon
"My Brookers gained her wings today. My baby girl is gone."
