A central Alberta family is hoping to raise awareness about a little-known disease which tragically took the life of their son in 2021.

Daniel Brown passed away in January last year from Batten Disease, a rare genetic neurodegenerative disorder also known as Neuronal Ceroid Lipofuscinosis, which is estimated to affect two to four in every 100,000 kids in the United States; Canadian data is harder to come by.

It’s a disease which involves severe and cruel symptoms, including vision loss, epilepsy, cognitive and speech problems, plus issues with coordination and balance.

June 9 is International Batten Disease Awareness Day.

Daniel’s mother, Lori Brown, who has husband Tony and younger son Cashen by her side, describes the disorder as combining ALS and Alzheimer’s.

“Daniel is remembered fondly by everyone who knew him. He touched many lives with his inherently sweet demeanour. His former school, Mattie McCullough Elementary, plants sunflowers as a tribute to him; to stand tall and face the sun, and keep shining even through adversity,” says Brown, now a volunteer with the Canadian Chapter of the Batten Disease Support and Research Association (BDSRA).

“Daniel was born perfectly healthy and hit every milestone until about two-years-old, then we noticed a speech delay. We began speech therapy, but this invisible disease was already present within his genes, unbeknownst to us.”

A fourth-generation Detroit Red Wings fan, Daniel also loved his Red Deer Rebels, attending many games. He also became a big brother at three, an exciting experience for him.

“His love of The Tragically Hip was really something special. To see a toddler jump up and dance every time they heard a Hip song… we were able to take him to their final performance in Edmonton in July 2016, but unfortunately, by that time, our previously typical little guy was wheelchair-bound, fed via g-tube, had lost his entire vocabulary, suffered from seizures, and was losing his sight.”

Brown hopes a cure can be found one day, but in the meantime, improving treatment options is key.

The only available treatment for CLN2 (late-infantile onset and later-onset), the specific type of Batten Disease Daniel had, he couldn’t access because the disease was too far along.

“This treatment is called Brineura, which is an enzyme replacement therapy, as this is what the body is missing and ultimately causes symptoms,” Brown explains. “It’s a four-hour infusion biweekly that is administered directly into the brain via a port. However, it only slows the progression for these children and isn’t a cure – meaning this is always a terminal diagnosis.”

As for what she’s learned in what would assuredly be a traumatic and devastating time, Brown believes community matters, and so does not taking a single day for granted.

“Family, friends, other families who are facing the same or similar types of diagnoses, as well as medical professionals who help care for your child — you would be surprised how genuinely people do care and the ways they show up for you when you allow them to,” she says.

“You need to celebrate the small victories every single day; sometimes this means taking 45 pictures when your child flashes the first smile you’ve seen in quite some time or when they’re feeling up for sitting outside, or being wheeled around the block for some fresh air.”

More information about Batten Disease is at BDSRA.org and battendisease.ca, as well as theisaacfoundation.com.

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