Innisfail’s Brooke Aubuchon’s is a tough little girl who has come a long way battling Batten disease, says her mother Robin Brand.
It’s been about four years since Central Albertans raised nearly $30,000 so she could go to New York for a surgery. Now the family wants people to know it has not given up the fight.
Batten disease, also known as Late Infantile Jansky-Bielschowsky disease, is a rare neurological disorder.
Aubuchon, nine, underwent surgery earlier this year after catching pneumonia three times. Since the surgery, she has gained weight and she is stable, said Brand.
Batten disease is one of many lysosomal storage diseases (LSD) where cells are thrown out of balance because of a disruption in their ability to dispose waste. Because of the damaged cells, patients have a neurological impairment.
Batten symptoms include: seizures, visual impairment, personality and behaviour changes, loss of motor skills, and the ability to walk and communicate.
Children with the condition will usually die between the ages of eight and 12.
Aubuchon’s older brother, Alexander, also had Batten. He died in 2011 when he was eight. He was diagnosed with the condition when he was almost five-years-old.
The family worries about Brooke’s fate, said Brand.
Isabella Aubuchon, six, is extremely close to her older sister, and she would be devastated if Batten claimed her sibling.
“It makes it hard to sleep at night,” said Brand. “It doesn’t leave our mind at all.”
Ethan Brand, another son in the family, was 10 when Alexander died, and it wasn’t easy on him, said Brand.
“And Isabella is so much younger,” Brand said.
Children with Batten disease cannot perform simple tasks such as getting in and out of bed, couch or bath tub.
“Brooke has gone from being a toddler to a baby,” said Brand.
Some children who have Batten are able to walk but not Aubuchon. She requires full-time care, but only receives about 20 hours of respite care per month. Respite care options are limited in Innisfail, compared to bigger centres — like Red Deer, said Brand.
Brand hasn’t been successful in getting additional funding from Alberta’s Family Support for Children with Disabilities (FSCD) to increase support hours and additional home care.
What does help the family is reimbursements it receives when Aubuchon needs to be taken to the hospital, but the money coming in isn’t enough.
“It’s not easy at all,” said Brand.
Follow Aubuchon’s journey on Brooke’s Hope and Fight with Batten Disease on Facebook.