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).

鈥淭he news (struck) us like a tonne of bricks,鈥� said Deana Larsson, Hemming鈥檚 daughter, as she teared up. 鈥淭here just aren鈥檛 any words for how it felt, it was absolutely gut-wrenching.鈥�

ALS, or Lou Gehrig鈥檚 disease as it鈥檚 also known in North America, is a fatal neurodegenerative disease. And although PLS and ALS are related, the former doesn鈥檛 always progress to the latter, explained Larsson. 鈥淲e thought we were in the clear as it usually transitions within a few years if it鈥檚 going to at all.鈥�

鈥淎LS can happen to anybody at any time,鈥� said Wendy Toyer, executive director of the . 鈥淎nd there鈥檚 no known cause or known cure.鈥�

Currently, there鈥檚 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.

鈥淲ith ALS, motor neurons are killed and once the last motor neuron in a muscle is dead, you鈥檒l 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.鈥�

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So when her father鈥檚 diagnoses came, Larsson, who鈥檚 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.

鈥淭here 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,鈥� continued Larsson.

鈥淵es, (ALS) is real, and I wasn鈥檛 trying to pretend it wasn鈥檛, I was just looking for a softer presentation that wasn鈥檛 so doom and gloom. I do know, obviously, that there鈥檚 a lot about ALS that is doom and gloom, but there鈥檚 a lot that isn鈥檛.

鈥淢y 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鈥檚 still Gramps, and no matter what happens, he鈥檒l always love you.鈥�

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

鈥淚 knew I could write, I wrote this (book),鈥� continued Larsson. 鈥淏ut if it鈥檚 a children鈥檚 book, which is what I had envisioned in my head, I couldn鈥檛 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.鈥�

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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鈥檚 youth members, Shannon Budau.

鈥淒eana approached me out of the blue,鈥� recalled Budau. 鈥淪he 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鈥檚 book and 鈥� asked me if I wanted to be part of it.

鈥淚 was right out of high school and had no experience illustrating a book, especially a children鈥檚 book, but I thought this could be a fun project,鈥� continued Budau.

However, before either party made a commitment to the other, Budau drew her vision for the story鈥檚 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鈥檇 found her illustrator.

鈥淚 just fell in love with that little girl,鈥� said Larsson. 鈥淚 knew then Shannon had to be the illustrator.鈥�

After that, Shannon says she 鈥渟tarted falling in love with the story along with Deana,鈥� and used her knowledge of the family and their stories to draw a series of pictures she believed would help children understand the book鈥檚 message.

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

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鈥檚 words to life on the page.

鈥淒eana 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,鈥� said Budau.

鈥淚 saw the progression in Neil,鈥� Budau continued. 鈥淭his disease takes (people) away even before they鈥檙e gone. It was really rough the last few months, watching him still be present in his mind but having his body not working.

鈥淪o I really see the value in this book, and can鈥檛 wait to read it to my children when I have them and teach them about this disease, and how there鈥檚 still hope even if they lose somebody. (No matter what,) there鈥檚 still good things that come from life.鈥�

鈥淪tories can be told over and over again,鈥� added Toyer. 鈥淭hat helps children understand. This (book) is a way to not only provide a tool, but to include the child in the family. ALS doesn鈥檛 just happen to one person, it happens to the whole family, and (projects like theses) give children the acknowledgement they need.鈥�

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鈥檚 $20 cost will be donated to the ALS Society of BC.

鈥淲ithout the ALS Society, my dad鈥檚 journey would have been completely different,鈥� explained Larsson. 鈥淭he 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鈥檛 pay for any of (them), they were on loan from the ALS Society.

鈥淚f families were to have to pay for those things, I don鈥檛 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鈥檚 life changing.鈥�

The official book launch for I Love My Gramps isn鈥檛 until June 16, however, copies of the book are already available for purchase by emailing ILoveMyGrampsbyDeanaLarsson@gmail.com. Larsson and Budau will also be at the , which is on Saturday, June 9, at Mill Lake Park in Abbotsford, selling copies of the book.

Sarah.Gawdin@theprogress.com
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