By Adam Frisk Local Journalism Initiative Reporter
When Randall Linton originally sat down to write This Little Light of Mine, he had no intention of becoming a published author. He simply wanted to write a manuscript of memories for his five grandchildren, ensuring they grew up knowing the story of their aunt Elisa.
Elisa Linton died 10 years ago this Halloween at the age of 22 from Sanfilippo syndrome, a rare, terminal genetic condition sometimes referred to as childhood Alzheimer’s.
This Little Light of Mine draws heavily on journals and photographs Linton maintained throughout Elisa’s life, providing a real-time account from a father’s perspective. The memoir was originally intended strictly as a private family record, Linton explained.
“I wrote the book originally for my grandchildren,” Linton said while sitting in his cottage that overlooks Minden’s Bob Lake. “I really wanted them to know who their aunt Elisa was, the inspiration she was, and the contribution she made to society.”
However, after sharing his writing with some close friends, including a professional copywriter and an author, Linton expanded his manuscripts after getting some feedback.
“They both got back to me about a month later and said they felt this book needed to get out to a wider audience,” Linton recalled. “There’s so much in it that would benefit people.”
The memoir has reached readers far beyond the lake and the Linton family. After selling out its initial 250-copy run at backto-back launch events in June, the author ordered another batch to meet demand.
While he worked full-time for much of Elisa’s life, Linton’s wife, Elisabeth, stepped down from her career as a food stylist to care for their daughter and serve as executive director of the Sanfilippo Children’s Research Foundation (SCRF), a charity the couple founded.
“I witnessed all of this,” Linton explained. “I saw what Elisabeth was doing with our kids, going on media interviews, promoting the foundation. I thought when I sat down to write the book, it would be better coming from me who witnessed this… from a husband and father’s perspective.”
The father said that at times, writing proved to be very emotional and overwhelming, sometimes forcing him to step away for weeks at a time because memories of hospital stays and difficult breathing episodes resurfaced. But, the journey ultimately offered him a sense of processing, Linton recalled.
“It became very cathartic for me,” Linton said. “It really helped me deal with a lot of what I was going through… having it come full circle.”
Sanfilippo syndrome is caused by a missing enzyme that breaks down natural occurring cellular waste in the body. Without it, toxins build up in organs and the brain, causing a progressive decline in the body’s function.
Linton reflected on the realities of watching his youngest daughter regress while at the same time trying to navigate the challenges of raising two older children and holding onto family faith.
“It’s bloody tough. It’s hell going through, watching your child go through this,” Linton said. “When we closed the doors, and it was just us, it was hard… If it wasn’t for our faith, I don’t know if we would have got through it as a couple.”
Through the SCRF, the Linton family has raised more than $8 million and funded 32 research projects globally. Proceeds from This Little Light of Mine directly support two primary research centres: one in Cleveland, Ohio, and the other at CHU SteJustine in Montreal.
At the book launch in June, Dr. Alexey Pshezhetsky, a lead researcher from Montreal, spoke to attendees about how the foundation’s $1 million bursary is helping research that has now reached the cusp of clinical trials, Linton said.
“Seeing Elisa’s legacy live on in both Cleveland and Montreal… you can’t really put it into words,” Linton said. “It’s a real blessing.”
For the Lintons, their cottage in Minden holds a particularly special place in Elisa’s memory.
“We would sit her in the screened-in porch so she could feel the breeze and hear the activity on the waterfront,” Linton recalled. “She loved it here.”
A plaque sits outside, near the screened porch next to a tree planted in Elisa’s honour, marking the spot where her ashes are buried overlooking the lake she loved.
Sales from This Little Light of Mine go directly to the SCRF.
Copies can be ordered directly through the foundation’s website at alifeforelisa.org or by emailing elisabeth@ alifeforelisa.org.
