“I live on my heels.”
Robin Brand is talking about her daughter Brooke Aubuchon.
Six-year-old Brooke has an extremely rare fatal disease that has no cure and no treatment. Batten disease has already claimed her older brother, Alexander.
Officially known as Late Infantile Jansky-Bielschowsky disease, those who have it will die, usually between the ages of eight and 12.
There are fewer than 10 cases in Canada. Worldwide, there are about 700 cases. It is an inherited nervous system disorder. As time passes, children affected become more and more mentally and physically disabled.
Brooke and Alexander were both born healthy. In the beginning, they met all their growth milestones — like walking — when they were supposed to, says Robin, 30.
“They both talked and said words, but they never did speak in sentences.”
The family lives in Innisfail. Dad Darcy Aubuchon is the sole breadwinner and Robin is a full-time stay-at-home mom. They have four other children, a four-year-old daughter and three boys, ages 11, 13 and 15. (The 11-year-old does not live full time with the family as he is Darcy’s son from a previous marriage.)
Delayed speech, seizures and vision problems are the beginning signs of Batten disease.
When Alexander was diagnosed, he was almost five years old. He died at age eight, on Sept. 20, 2011. At that time, younger Brooke had not been diagnosed with Batten disease. But then she began having seizures and in the rarest of things, and surely among the most difficult, her parents learned in 2012 that Brooke also had the fatal illness.
“It was really hard at first. A real shocker because we weren’t expecting it to happen again,” says Robin.
“Brooke is so different than other Batten children ... (it’s) going real slow with Brooke ... her brother went real fast.”
Robin follows a support group and says a number of children have passed away in the past month.
“It’s really hard, especially when you follow the children’s stories for years.”
When Brooke was accepted for a gene therapy clinical trial in New York in 2013, the family hit a wall because, while the treatment cost was covered by U.S. clinic, the living costs of Brooke and her parents was not. They could not afford to go.
Pleas to the provincial government for living costs funding were to no avail. Kerry Towle, MLA for Innisfail-Sylvan Lake, got involved trying to obtain funding for the family.
In the end, community fundraising resulted in $30,000 being raised so they could go to New York, and stay at the Ronald McDonald House there. Brooke took the treatment very well, said her mother, but it’s uncertain if it was effective.
“I think it has (made a difference). To a certain point. Like at this stage her brother was already blind, bedridden, couldn’t talk anymore. He was ... tube fed. ... He was just not there anymore.
“Brooke, she’s still there. She still does eye contact with you. She still has words, a couple words ... she can still see and she’s going to school (kindergarten),” says Robin.
“I don’t regret going to New York if it’s going to help my child or someone else’s child.
“Can’t we just take the chances, because if we don’t take the chances, is there ever going to be a treatment?”
The cost of the trip was $17,000, and the remaining money, which is almost gone, has been used for Brooke’s care, for things like the many trips — sometime planned, sometimes unexpected — to doctors in Calgary. This summer Brooke had a six-day seizure and was hospitalized in Calgary.
They do receive some funding to help with the costs of a critically ill child but it doesn’t even cover the cost of gas to Calgary and back.
“Anything back is great,” says Robin.
On Wednesday, Brooke and her mom went to the Alberta Children’s Hospital in Calgary so Brooke could be fitted with ankle stabilizing braces.
The family has a hard time making ends meet. Recently, their van was damaged in a hit and run, and they were forced to get a new vehicle. They have used both the Innisfail food bank and the Christmas Bureau at times, says Robin.
Brooke is stable right now. Her seizures come and go “as they please” every week.
“My 13-year-old son, he’s really great because he’s gone through it with his brother. ... I can leave Ethan with Brooke for 15 minutes while I run to the grocery store and grab a few things. I don’t have to worry — if there’s a seizure or anything he knows what he’s got to do.”
Towle, who has spoken several times in the legislature about Brooke and others who run into costs associated with rare illnesses, is still angry that the health minister (Fred Horne at the time) refused to meet with Brooke’s parents and that they couldn’t get help provincial government with living expenses in New York.
“This family is not well off, it has limited means. I was asking government to have some compassion, show some heart and find a way to cover the day-to-day expenses of the family so that they could attempt to find at least one option that may possibly give (Brooke) more time or a chance at a life.
“For Brooke’s family, the cost that they were looking for was like 17,000 bucks. And it was the difference between life and death, right? Like $17,000? Come on. We can do better than that.”
The process for such families to get any assistance is “convoluted and confusing,” Towle said on Wednesday.
“We’ve (Wildrose) always said that things like this can be looked at on a case-by-case basis. We have a very rich province. With the assistance with their living expenses while they’re at the clinic, we felt strongly there could be a case made for that being supported.”
It never happened.
Robin says that there’s a possibility of an enzyme treatment coming to Canada that might help Brooke.
Darcy is looking at information about stem cells right now. Robin admits she and her husband spend a lot of time looking on the Internet.
“All we have is hope.”
For more information, go to the Facebook page: Brooke’s Hope and Fight with Batten Disease.
barr@www.reddeeradvocate.com