Daniel’s mother, Lori Brown, who has her husband Tony and youngest son Cashen by her side, describes the disorder as a combination of ALS and Alzheimer’s disease.
“Daniel is fondly remembered by all who knew him. He touched many lives with his inherently gentle demeanor. His former school, Mattie McCullough Elementary, plants sunflowers in tribute to him; to stand and face the sun, and keep shining even in 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 went through all the stages until he was about two years old, then we noticed a speech delay. We started speech therapy, but this invisible disease was already present in his genes, without our knowledge.
A fourth-generation Detroit Red Wings fan, Daniel also loved his Red Deer Rebels, attending many games. He also became a big brother at age three, an exciting experience for him.
“His love for The Tragically Hip was really something special. Seeing a toddler jump and dance every time he heard a Hip song…we were able to take him to their last performance in Edmonton in July 2016, but unfortunately , by then our previously typical little guy was in a wheelchair, fed via g-tube, had lost all of his vocabulary, suffered from seizures and lost his sight.
Brown hopes a cure can be found one day, but in the meantime improving treatment options is essential.
The only treatment available for CLN2 (late infant onset and late onset), the specific type of Batten disease that Daniel suffered from, which he could not access because the disease was too advanced.
“This treatment is called Brineura, which is enzyme replacement therapy, because that’s what the body is missing and ultimately causing symptoms,” says Brown. “It’s a four-hour infusion every two weeks that is administered directly into the brain through an orifice. However, this only slows the progress of these children and is not a cure, meaning it is still a terminal diagnosis.
As for what she learned in what would surely be a traumatic and devastating time, Brown believes community matters, and so doesn’t take a single day for granted.
“Family, friends, other families facing the same or similar type of diagnosis, as well as the medical professionals who help care for your child – you would be surprised how much people really care about you and how they present themselves to you when you allow them to,” she says.
“You have to celebrate the small victories every day; Sometimes that means taking 45 photos when your child puts on the first smile you’ve seen in a while or when they feel ready to sit outside or walk around the block for some fresh air.
More information on Batten disease is at BDSRA.org and battendisease.caas good as theisaacfoundation.com.