The family of Brooke Aubuchon, the six-year-old local child dying from incurable Batten disease, continues to struggle with their daughter's agonizingly slow deterioration in health, diminishing finances and bad luck.
Last week, the family's van, used to transport Brooke to Calgary to receive ongoing treatment, was struck by a hit-and-run driver. The family can no longer use the badly damaged vehicle to take Brooke to her medical appointments.
Red Deer city RCMP confirmed police responded to a call at 7:33 p.m. on Sept. 30 that a hit-and-run collision took place in the city's north end.
Brook's mother Robin Brand said the family was in Red Deer to shop and their van was sideswiped by a truck near 77 Street in the city's north end. Brand said the truck failed to stop and drove south to Save-On-Foods on 67 Street. The fleeing truck was followed into the store's parking lot. The truck then rammed the front of the family van. The hit-and-run driver then fled the scene. No one was hurt in the van. Brooke was not with the family during the incident.
Brand said the van sustained serious damage. Although the family can still use the vehicle in the short term for local use, it's not roadworthy for out-of-town trips, said Brand.
“I can probably drive it around town a little bit but probably not much longer. It is missing a headlight, leaking and the whole side of the van is damaged,” said Brand, adding it's the second time in less than a year her family has been victimized by a hit-and-run driver.
In the meantime, Brooke's condition has become increasingly more stressful for the financially challenged family, which has now almost run out of the thousands of dollars that was donated to them last year for Brooke's ongoing care.
The child suffered an unprecedented six-day seizure in late August and had to be hospitalized in Calgary. Brooke survived the seizure and she is back home. With experimental gene therapy surgery last year in New York not producing noticeable improvement in Brooke's health, doctors are unable to give the family a prognosis on the child's condition, or any timetable on how much longer she can survive.
“Her metabolic doctor told me he can't give me a timeline or anything because she is doing really good compared to all the rest of the Batten children,” said Brand. “From the gene therapy it was supposed to attack the white matter in her brain but instead it clung on to the grey matter. It is not doing what it was supposed to do. It is apparently doing other things. They can't tell me exactly what it is doing. They don't know.”
Brooke was diagnosed with the disease in October 2012. Batten disease is a rare, fatal, progressive and inherited disorder of the nervous system. It killed Brooke's brother Alexander on Sept. 20, 2011.
Batten disease children can become blind, bedridden and demented. They may also suffer mental impairment, worsening seizures and progressive loss of sight and motor skills. Although many don't pass away until the late teens or 20s, the disease often claims the very young like Alexander.
For the past two years Brand and her family have moved forward the best they can with generous moral and financial support from the community but not from the provincial government. With no effective treatment available in Canada for Batten disease, the family chose to go to the United States for experimental treatment. While citizens in the community and beyond have rallied to help, the provincial government has not, steadfastly sticking to its longstanding policy of not financially supporting out-of-country experimental treatment.
“The doctors have told me Brooke is a pretty strong girl. They don't think Brooke is going anywhere any time soon. As of today, she has lost a few more words but she is pretty much stable,” said Brand, who is unsure if there is any other new treatment available that might help Brooke. “I just hope they come up with a cure for it.”
If any citizen or organization can offer support to the family, particularly with transport to ensure Brooke can continue with medical appointments in Calgary, they can call Brand at 403-865-3822.
