BUCKHANNON – A Buckhannon resident has penned a children’s book titled, “My Daddy Has ALS” in hopes of raising awareness about ALS and what it’s like to live with a parent, caretaker or family member who has been diagnosed with the neurodegenerative disease.

Mary Alice Poling wrote the book about ALS, or amyotrophic lateral sclerosis, to help folks understand more about the disease. Poling also wanted to create a children’s book that could be included in care packages sent to people afflicted with ALS to help their children see that they’re not the only youngsters living with a parent who has ALS.

Poling’s son, Seth Poling, was diagnosed with it in 2017; however, he suffered from symptoms of the disease for about four years prior to the diagnosis. A Buckhannon native and graduate of Buckhannon-Upshur High School, Seth lives in Morgantown, West Virginia with his wife Erika Helmick Poling and sons Liam Seth and Bayler Michael Poling.

“Seth had received boxes from others, and inside they had neat things like tie-dyed kits that the boys cold do,” Poling said. “Seth and I thought we could include a copy of the book when we send out a box. If they have young children, they could see how Seth and his boys relate even though Seth has ALS.”

Seth Poling grew up in Buckhannon and is the son of Holt and Mary Alice Poling. He has a sister, Brittany Alden, who serves on the SETH Project Board of Directors. The SETH Project is a nonprofit group of volunteers dedicated to raising funds to help people understand more about ALS. The SETH Project plans to eventually provide scholarships to high school students interested in pursuing a career path in which they would likely work with ALS patients, such as physical therapy, the medical field, etc.

The SETH Project also strives to increase the public’s awareness of how they can help PALS, or People living with ALS, and also aims to assist PALS themselves in identifying community and healthcare resources available to them.

Poling said she was lying in bed, and it just felt like the Lord was telling her she needed to get up and write a book about Seth from his sons’ perspective. So, that is exactly what she did.

“I got up out of bed and started writing a book about Seth from his boys’ point of view,” Poling said. “It is a self-published book and I have put some copies out for sale.”

She said anyone wishing to purchase a copy of “My Daddy Has ALS” may do so at First Community Bank and Nails Plus Beauty Salon in Buckhannon. The books are $15 each.

Poling said she wants folks to see that Seth and his sons have a wonderful relationship. Even though Seth cannot walk or talk any longer, Seth and his sons, Liam and Bayler, still find ways to do everyday fun things.

They have wonderful times together, Poling said.

“The book starts out with Liam saying ‘hello’ and telling that he is three years old,” Poling said. “He says, ‘I live with my mommy and daddy and my brother, Bayler, and we live in a little town in West Virginia.’”

Poling said she took photos of Seth, Erika, Liam and Bayler and found an app that turns photos into cartoons.

“The photos look just like Seth and his family – only they are cartoons,” Poling shared. “At the end of the book, Seth describes how he found out he had ALS so people who do not know Seth’s story have the background on that. It also contains facts about ALS and lists places where folks can learn more about ALS. We are about education.”

Folks who wish to purchase a copy of “My Daddy Has ALS” may send a message to Mary Alice Poling on Facebook Messenger or visit the two places in Buckhannon which carry the book for sale.

According to the ALS Association website, sometimes referred to as Lou Gehrig’s Disease, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The motor neurons of someone living with ALS degenerate over time, and when those neurons die, the person’s brain loses its ability to initiate and control muscle movement.

Muscles weaken, physical functions become impaired, and people may lose the ability to speak, eat, move and breathe, the ALS Association site says.