A Rare Gem with a Rare Disease: Interview with Author/Illustrator Paige Snedeker

A rare gem with a rare disease may sound like an odd title for a blog post to you. However, we’re addressing two exceptional facets of life today. The main purpose of this post is to highlight a young woman who suffers from a rare genetic disease but who is determined to shine stories of hope for others. Another component is to raise awareness about rare diseases and how they affect people. February 28 is “Rare Disease Awareness Day.”

You may have heard of Paige Snedeker. She’s a rare gem and she guest blogged for me last week. You can check out her guest post, “Trials and Purpose” later.

Paige is a talented author and illustrator. A great deal has happened since writing and illustrating her first book, Sofia and Her Morningstar, which released in 2013.

One milestone occurred in the fall of 2016. Paige finally received a diagnosis of the rare neurodegenerative disease she has dealt with for over twenty years. She and her brother, Tyson, have Brown Vialetto Van Laere Syndrome (BVVL). Tyson’s twin brother passed away when Paige was nine years old. He also had BVVL.

B2 (riboflavin) therapy has begun and we’re all praying for good results. However, Paige isn’t the kind to sit around and do nothing while she’s waiting.

She wrote and illustrated a second book, Camo’s Journey. It released in January 2017.

Today, I’m honored to interview Paige about her writing and illustrating journey.

Interview with Paige Snedeker

Paige, share with us how you began your writing journey.

When I was in middle school, I never believed I could be a writer, but I loved to write stories so much. My imagination was overwhelming.

When I started high school, my teacher encouraged me to write. It was very difficult. At the time, my grammar was not very good, and I was scared to write because of that.

I did not have the opportunity of taking any writing classes until after I graduated from high school. I became really serious about my writing after attending my first Florida Christian Writers’ Conference, which I still attend every year.

What inspired you to write your first book, Sofia and Her Morningstar?

I always wanted to help people through my writing. I want people to know that they have been created for a reason and that they should be happy with who they are.

What inspired you to write Camo’s Journey?

After I graduated, I wanted to become a detective, so I started studying for college.

Then, one day I found out about the writers’ conference from one of my favorite authors.

After I attended it, I learned that God wanted me to continue writing. I wanted to share my story with others and was able to do this through my characters in Camo’s Journey.

It took you five years to complete your first book. About how long did it take you to complete the second one?

After I attended the first conference, I started writing Camo’s Journey. It took me six months to finish writing it. Then I started the illustrations. That took more than a year. I had bad illustrators’ block. Ha-ha!

You’re funny, Paige. What do you do when you face writer’s or illustrator’s block?

I try to take my time. I write in my journal to help me process my thoughts and ideas. Also, I go to God’s Word for inspiration. After all, He is why I do what I do in the first place.

So, did you do anything differently the second time around? Any lessons learned?

As I wrote Camo’s Journey, my writing began to expand. The story became deeper, and I put more of my passion into it.

When I wrote Sofia and Her Morningstar, I was more distant from the Lord. As I grew older, I finally surrendered my heart to Jesus completely.

So, Camo’s Journey is more powerful because it reflects more of what the Lord has done in my life and in my heart.

As for my illustrations, I used more vibrant colors. The artwork has improved as I have gained more experience with the techniques.

Tell us about the various techniques you used in illustrating your books.

I have used both watercolors and acrylics in my illustrations, but mostly watercolors.

My techniques include using different kinds of paintbrushes, paper towels, sponges and balloons. Sometimes I use Q-tips as well. We also use textured paper.

I use clenched teeth to hold all of these items. My art teacher will hold the paper in
front of me. She cuts out the different shapes and pieces and I told her how to arrange them.

I have also done a couple of stained glass pieces. Working with stained glass is pretty scary, and it challenges me in a different way.

Who has influenced you the most in your writing/illustrating?

My nurse, Pat inspired me the most. I had to go through a lot of personal trials. I will tell you this: other nurses mentally abused me, and I was so broken until Pat came. She showed me that I am an amazing person and that God has given me many talents. She encouraged me to use them without fear. That is why I wrote. She is my hero, and I love her a lot.

What’s next? Is there a third book in the future?

I am currently working on my third book, which will finish my trilogy. I also have other kinds of writing ideas in mind. But these projects are in the very early stages, so I don’t want to speak about them just yet.

You also have a blog and want to branch out your speaking ministry as well, right? 

try to write a blog post every month about something more personal or related to my work. My blog is called The Paige Project, and it can be found on my website.

I have spoken in a few places and even Skyped with a school in the Bahamas to share my story with the students remotely.

I also want to spread the word about my disorder, BVVL, since it is so incredibly rare. There is a way to help children with this disease, but it is so little known that barely anyone knows how to treat it.

The older an individual with BVVL becomes, the less chance the treatments will have any effects. In the last few months, I have started my treatments and I’m getting stronger every day, but my body has already been damaged because of the disease.

As much as possible, I want to continue to share my story with others, so I am always looking for more opportunities to speak in local churches, etc.

I want to bring hope and encouragement and tell others like Philippians 4:13 tells us, that, through Christ, anything is possible.

Thank you so much for sharing with us, Paige. You are a rare gem and an encouragement to us all. May the Lord continue to meet all of your needs and bless your work for His glory.

Readers, you can connect with Paige on her website at Paiges for God’s Glory.

You may also want to read a book review of Camo’s Journey here and get in on the special prize giveaways!