Deana Larsson with her book, “I Love My Gramps,” which she wrote in memory of her father, who passed from ALS in 2016. (Sarah Gawdin/The Progress)

Chilliwack duo write and illustrate children’s book to help families deal with ALS

June is ALS Awareness Month: the disease affects thousands of Canadians each year

In the fall of 2012, after living with primary lateral sclerosis (PLS) for six years, Neil Hemming and his family were hit with the knowledge that his condition had progressed to amyotrophic lateral sclerosis (ALS).

“The news (struck) us like a tonne of bricks,” said Deana Larsson, Hemming’s daughter, as she teared up. “There just aren’t any words for how it felt, it was absolutely gut-wrenching.”

ALS, or Lou Gehrig’s disease as it’s also known in North America, is a fatal neurodegenerative disease. And although PLS and ALS are related, the former doesn’t always progress to the latter, explained Larsson. “We thought we were in the clear as it usually transitions within a few years if it’s going to at all.”

“ALS can happen to anybody at any time,” said Wendy Toyer, executive director of the ALS Society of British Columbia. “And there’s no known cause or known cure.’

Currently, there’s anywhere up to 3,000 Canadians living with ALS, and about 400 of those reside within the province: however, each day two or three British Columbians succumb to the disease.

“With ALS, motor neurons are killed and once the last motor neuron in a muscle is dead, you’ll never get it back. It effects everyone differently, but (essentially) your voluntary muscles deteriorate until paralysis. For some, only eye movement remains but the (mind) is still totally fully functional.”

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So when her father’s diagnoses came, Larsson, who’s an elementary school teacher and mother to two young daughters, said she began looking for books for her three- and five-year-olds to help them understand what was happening to their grandfather.

“There were a few different things available, but almost every one of them had pictures of somebody in a hospital hooked up to tubes and wires, and this and that,” continued Larsson.

“Yes, (ALS) is real, and I wasn’t trying to pretend it wasn’t, I was just looking for a softer presentation that wasn’t so doom and gloom. I do know, obviously, that there’s a lot about ALS that is doom and gloom, but there’s a lot that isn’t.

“My dad was still my dad inside, even though his body was failing him, and I wanted that to be the focus (for my children): it’s still Gramps, and no matter what happens, he’ll always love you.”

So shortly after her father learned of his health deterioration, Larsson sat down and put paper to pen, writing I Love My Gramps—a book about ALS for children—in about an hour.

“I knew I could write, I wrote this (book),” continued Larsson. “But if it’s a children’s book, which is what I had envisioned in my head, I couldn’t draw a stick person to save my life, so I needed (to find) somebody who has a vision, has a heart for it, and is willing to help me out.”

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With that in mind, Larsson says she spoke with a pastor at her church and was directed to one of the congregation’s youth members, Shannon Budau.

“Deana approached me out of the blue,” recalled Budau. “She told me our pastor had referred her to me because I was artsy and liked drawing. She told me she had roughed up this children’s book and … asked me if I wanted to be part of it.

“I was right out of high school and had no experience illustrating a book, especially a children’s book, but I thought this could be a fun project,” continued Budau.

However, before either party made a commitment to the other, Budau drew her vision for the story’s main character and sent it to Larsson.

It was then, while looking at the little blonde girl with pigtails Budau had drawn for the book, that Larsson knew she’d found her illustrator.

A family photo of Neil and Donna Hemming, with their grandchildren Landon, Jenaya, Arella, and Evie.

“I just fell in love with that little girl,” said Larsson. “I knew then Shannon had to be the illustrator.”

After that, Shannon says she “started falling in love with the story along with Deana,” and used her knowledge of the family and their stories to draw a series of pictures she believed would help children understand the book’s message.

“I blended (Neil’s) multiple grandchildren together into that one little girl,” explained Budau. “I wanted (the images) to look childlike and cartoony, but I also wanted it to be real and bright and happy.”

So in her spare time, Budau would put pencil crayon to sketch pad and delve into the world of I Love My Gramps, bringing Larsson’s words to life on the page.

“Deana told me stories about how her dad made a (wooden) train and boxes (for the grandkids), and I really made sure those were part of it,” said Budau.

Shannon Budau began illustrating Larsson’s book fresh out of high school.

“I saw the progression in Neil,” Budau continued. “This disease takes (people) away even before they’re gone. It was really rough the last few months, watching him still be present in his mind but having his body not working.

“So I really see the value in this book, and can’t wait to read it to my children when I have them and teach them about this disease, and how there’s still hope even if they lose somebody. (No matter what,) there’s still good things that come from life.”

“Stories can be told over and over again,” added Toyer. “That helps children understand. This (book) is a way to not only provide a tool, but to include the child in the family. ALS doesn’t just happen to one person, it happens to the whole family, and (projects like theses) give children the acknowledgement they need.”

But more than a tool, Larsson says the book is also a way for her to give back to those who helped her family through such a difficult time: 50 per cent of the book’s $20 cost will be donated to the ALS Society of BC.

“Without the ALS Society, my dad’s journey would have been completely different,” explained Larsson. “The equipment they had to offer: my dad had wheelchairs, walkers, special equipment in the bathroom, a hospital bed, a lift, and a special chair in the living room that would lift him to standing. We didn’t pay for any of (them), they were on loan from the ALS Society.

“If families were to have to pay for those things, I don’t see how they could. So when people donate to the Ice Bucket Challenge, or to the Walk, or buy a book where half of the proceeds go to the ALS Society, it might not seem like a big deal (at the time), but to the people in those families (dealing with ALS), it’s life changing.”

The official book launch for I Love My Gramps isn’t until June 16 (3-5 p.m. at First Avenue Assembly), however, copies of the book are already available for purchase by emailing ILoveMyGrampsbyDeanaLarsson@gmail.com. Larsson and Budau will also be at the Fraser Valley Walk for ALS, which is on Saturday, June 9, at Mill Lake Park in Abbotsford, selling copies of the book.


@SarahGawdin
Sarah.Gawdin@theprogress.com

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