Doctors trade medicine for music to raise funds for research into this rare condition
The Australian Doctors Orchestra (ADO) – about 100 classically trained musicians who are also medical professionals – are converging on The Concourse in Chatswood this October for a special concert to raise funds for the Batten Disease Support and Research Association (BDSRA).
Bobbie Riddle didn’t know anything about Batten disease until her daughter Tayla, 12, was diagnosed at three years old. She had a life expectancy of six to 12 years.
Batten disease is a rare family of severe neurodegenerative disorders (13 types) that mostly affect children. Children with the genetic disease are usually born healthy and develop normally until symptoms appear and the disease typically progresses to seizures, loss of ability to speak and swallow, cognitive decline, dementia and early death. There are about 50 cases in Australia.
“Apart from a speech delay, we didn’t realise there was anything wrong,” explains Bobbie. “She had a normal birth, she hit all her developmental milestones. Then one day at daycare, she had a seizure.”
After testing, Tayla was diagnosed with late infantile Batten disease She is missing an enzyme in her brain that breaks down waste, so her brain cells collect waste.
“We were pretty much told just to go home and enjoy life with her and that there was nothing that we could do,” says Bobbie.
Bobbie and her partner Jay couldn’t sit back and do nothing, so they headed to the USA in 2017 with Tayla and son Kai, now 15, for a clinical trial of medication. The family returned home to Warriewood in 2019 when the treatment came to Australia, government funded on the Life Saving Drugs Program.
“(Tayla) gets fortnightly brain infusions with an artificial form of the enzyme that she’s missing,” explains Bobbie. “Rather than the waste building up, it’s now being broken down every fortnight. It doesn’t stop the disease, but it will start to slow down the progression of the disease.”
Tayla is in a wheelchair, can’t walk independently, is blind and can speak just a few words, but the treatment means she has a better quality of life and smaller daily seizures rather than big seizures.
“She goes through so much, but she’s so brave and courageous, and is always smiling,” says Bobbie. “She just fights so hard, she’s so determined. She’s just amazing.”
Tayla attends Fisher Road School in Dee Why, which Bobbie says has been ‘amazing’ and a ‘wonderful support.’
“We know that Tayla has only a short life to live, but we make sure that we make that count, so that she has had the best life possible,” says Bobbie. “I feel blessed for every day that I have her because that was never guaranteed.”
The ADO will perform at The Concourse in Chatswood at 2pm, Sunday 12 October, with proceeds going to BDSRA. Visit: theconcourse.com.au
