Sarah Whitman: Clearwater woman’s faith inspired her to become illustrator and author

At age three, Paige Snedeker developed a rare neuromuscular condition. Over the course of a decade, the illness took her hearing, most of her sight and the use of her limbs.
Paige Snedeker and her mother Julie Snedeker (Photo courtesy of the Paige Project)
Paige Snedeker and her mother Julie Snedeker (Photo courtesy of the Paige Project)
Published May 22

I came across the colorfully covered book at an arts fair months ago: Sofia and Her Morningstar by Paige Snedeker.

The title caught my attention because my toddler daughter is named Paige.

A cheerful woman at the artist’s booth told me the author’s story.

At age three, Snedeker, a Clearwater resident, developed the rare neuromuscular condition Riboflavin Transporter Deficiency Type Two

Over the course of a decade, the illness took her hearing, most of her sight and the use of her limbs.

Her older twin brothers David and Tyson also suffered from the disease, David passing away at age fifteen.

Snedeker’s lifelong Christian faith inspired her to become an illustrator and author, using an interpreter and a paint brush between her teeth.

‘She is really an inspiration,’ I recall the woman at the arts fair saying.

That day, I purchased the book and grabbed Snedeker’s information card.

I placed it among countless others on my shelf and there the book sat until tonight — when I read it to my daughter as a desperate alternative to Kids YouTube.

It is a sweet story about the friendship between a flower, Sofia, and a butterfly, Morningstar. Sofia wishes to be more like her friend. She wants to fly instead of being stuck in the ground. The butterfly teaches her, “God has made you who you are, you should be happy.”

As I read, my daughter whined to watch my phone. She rolled over pouting. So, I turned the page to Snedeker’s bio.

“I want you all to know you can trust God whatever challenges you face. I want you to know you can keep your faith, joy, love and peace,” she said in a letter to readers.

Her words both filled and broke my heart.

This is a young woman who slowly lost her physically abilities, who one day heard her mother’s voice and the next did not. This is a young woman who saw her brother buried by the same illness which confined her to a wheelchair. This is a woman who can not see the night sky.

Still, she works to give others hope.

I can only hope to raise a Paige with such a kind heart and love for God.

The proceeds of Snedeker’s books go to The Paige Project to help find a cure for Riboflavin Transporter Deficiency. The majority of funds are donated to the nonprofit CureRTD. For more information on the author and to purchase Sofia and Her Morningstar visit www.thepaigeproject.org.

Calendar

Christ Our Redeemer Lutheran Church, 304 Druid Hills Road, will host a New Orleans Jazz Style Worship Service at 8 and 10:30 a.m. May 26. Worship will feature a Jazz music combo. For more information, visit corlutheran.org.

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