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Edwardsville resident Sarah Kathryn Frey, shown with her service dog, Alice Eloise, has dealt with severe illness and disability since she was 12. She has written her second children’s book based on her adventures with the dog.
This is an illustration from “A Dog at the Zoo?,” which is the second children’s book written by Edwardsville resident Sarah Kathryn Frey.
Edwardsville resident Sarah Kathryn Frey with her service dog, Alice Eloise. Frey, who has dealt with severe illness and disability since she was 12, has written her second children’s book based on her adventures with the dog.
Edwardsville resident Sarah Kathryn Frey with her service dog, Alice Eloise. The dog has been Frey’s constant companion for the past 10 years.
This is the cover of “A Dog at the Zoo?,” which is the second children’s book written by Edwardsville resident Sarah Kathryn Frey.
Alice Eloise, who is Sarah Kathryn Frey’s service dog, is the subject of two children’s books about their adventures, including “A Dog at the Zoo?”
In her daily life, Sarah Kathryn Frey faces challenges that most people couldn’t imagine. But her search for silver linings continues.
The Edwardsville resident who has struggled with serious illness since she was 12 published her first children’s book, “Alice Eloise’s Silver Linings: The Story of a Silly Service Dog” in January 2021 after a Kickstarter launch in October 2020.
Her second book, “A Dog at the Zoo?”, will be published in 2023. Pre-orders are available on Kickstarter at www.Alice-Eloise.com.
“As an independent author, I have the challenge and delight of being involved in every step of the publishing process - including funding our print runs, which we do on Kickstarter,” said Frey, a 2009 Edwardsville High School graduate now 31. “ We did this with our first book two years ago, using the preorder funds to send our book to print, and we are doing this once again with our second book now. We set an initial goal (of $7,000) and, with the help of our readers, we have already surpassed it.
“I’m excited that we’re off to a good start, but I’m also excited to see where this campaign launch will take us," she said. "It’s available to pre-order through Nov. 3 and everything that we raise will go to printing these books because it has gotten very expensive to do so.
"We sent the book to our editor in March 2021 and we sent started the illustrations in July 2021 and we’ re still working on them," Frey said. "We’ re excited about finally getting to share this book and our mission with the community.”
Frey’s first book explored the journey of Alice Eloise, her service dog and constant companion for 10 years. Alice Eloise is a Double Doodle, a dog that has one Goldendoodle parent and one Labradoodle parent.
Even before the first book was published, a trip to the zoo with Alice Eloise was an easy choice for the theme of her second book.
“The illustrations and Alice Eloise’s interactions with the animals are absolutely adorable and we wanted to focus on that humor and sweetness,” Frey said. “But we also want to include a message for kids that is educational, and they learn about service dogs and what they do.
“It’s also a social and emotional lesson that can help them in their day-to-day lives. The first book focused on Alice Eloise overcoming challenges to become a service dog, but every cloud has a silver lining and there’s always something positive to think about even when you’re struggling.”
The message from the first book remains the same for “ A Dog at the Zoo?” but with a new twist: “Be Somebody’s Silver Lining.”
“Whenever you see people around you who are struggling, you can step in and become a silver lining for them,” Frey said. “Alice Eloise encounters people at the zoo who for whatever reason, their day hasn’t gone the way they wanted. She steps in and becomes the silver lining.”
While writing the first book, Frey was aiming for an audience of kids in the 3 to 11 age range. She was surprised to find how many adults enjoyed the book as well.
“Whenever you’re marketing a book and people ask about the age range, you are advised not to say ‘everybody’ because it is said that there is no book that is for everybody,” Frey said. “But it has been such a delight to find that there is a wide range of people enjoying our books.
“One of the greatest things about this is just being able to connect with people through these books. A few weeks ago, we were at the Edwardsville Public Library Book Festival and a 12-year-old girl came up and gave us a big hug. She talked about what an inspiration we are to her because she has gone through health problems of her own.”
Considering the challenges that she faces on a daily basis, Frey said that during the nearly two-year span between the release of her first book and the release of the second book, her health has been relatively stable.
“Life is ever-evolving, and I try to evolve with it, but in my late teens and my early 20s, things were chaotic health-wise, to say the least,” Frey said. “When Alice Eloise first came into my life, I was not in a great place physically and it was the most challenging time of my life. She and I grew a lot through that time, and little did I know that better days were ahead.
“We still have plenty of struggles, but I’m more or less stable. I’m working to regain parts of my life that were affected during those chaotic times.”
When she was 12, Frey came home from horseback riding camp with the worst sore throat of her life, along with swollen, painful lymph nodes and a fever. Oddly enough, the horse she rode and cared for at camp mysteriously died the night she became so sick.
Frey’s illness was diagnosed as a staph infection, but even after the active infection was gone, the symptoms lingered for months and from that time, she never was the same again.
That winter, Frey ended up in the emergency room multiple times with fevers and inexplicably high inflammation markers.
In early 2005, Frey sprained her ankle in dance class. The next morning, her foot was drastically changing colors and temperatures and the pain had intensified to such a degree that even the lightest touch of a cotton ball would bring her to tears.
Frey was diagnosed with Reflex Sympathetic Dystrophy (RSD), also called Complex Regional Pain Syndrome (CRPS), a neurological pain condition. This causes her body to continually misfire pain signals, amplifying pain even after the initial trauma has passed.
Thanks to aggressive treatment, Frey’s ankle got better, and she went back to dancing.
Soon after, Frey completely lost her appetite and developed unbearable stomach pain. She could hardly eat, leaving her malnourished as her weight quickly dwindled.
Frey traveled to Chicago where hyperbaric oxygen treatments provided much-needed relief. But when they stopped working, RSD pain spread all through her body and her GI symptoms worsened. She and her parents traveled the country, looking for any help they could find.
When Frey had a procedure to place a port-a-catheter, she woke up to have the most traumatic reaction she has ever experienced, leaving her paralyzed for a week and unable to take more than a few steps for the next month.
Her right arm has been fixed in a hyper-extended position and has been extremely painful ever since.
In February 2011, Frey found herself in a hospital 1,000 miles from home with a raging fever, depleted blood counts and skyrocketing liver enzymes and inflammation markers. She suffered through two weeks of this and wouldn’t have survived if her mother hadn’t insisted a hematologist be consulted. She was given a blood transfusion, which temporarily settled her symptoms.
When Frey had a nearly identical episode a few months later, a bone marrow biopsy revealed she has Hemophagocytic Lymphohistiocytosis (HLH), a very rare, life-threatening disease typically found in young children.
The only potential cure for HLH is a bone marrow transplant. Frey’s body was too weak for this, so her doctors tried a gentler treatment. Thankfully, she responded.
Hoping to avoid more extreme interventions, she does her best to stay stable by receiving transfusions as needed and by being extra careful to prevent infections that can easily send her into a flare. Frey was released from the hospital following an HLH flare the very same day Alice Eloise came to her new home to live with her.
Several years ago, Frey wrote a manuscript for her first book, but the project was set aside for a while because she got sick and lost the use of her left arm as well.
“I’ve been using total parenteral nutrition (TPN or IV nutrition) since I was 19 and I originally had nine hours a day that I wasn’ t infusing,” Frey said. “ But around 2015 or 2016 I had a flare-up of my HLH and for years now I’ ve been on TPN IV nutrition for 24 hours a day.
“Because my arms are disabled, I have trouble carrying things and that’s very limiting. When Alice and my dad or a friend and I will go out for a walk, someone has to carry my backpack. I’m delighted to say that with the help of my doctors, we have been able to get me some time off of that infusion. We’re up to six hours a day, which is just three hours away from the original length of time I had previously.”
For Frey, the time away from IV nutrition has been liberating.
“It has been so exciting to be able to go to church and walk around freely with Alice Eloise,” Frey said. She and I can walk around the neighborhood on our own,” Frey said. “We are now feeling like we can take on the world with this newfound freedom.”
“While things are so stable, I’m going to go to a doctor next month to see if there is anything they can do with my arms. I don’t know what will come of that, but you will never know if you don’t try. Thankfully, I was blessed with a personality to be able to deal with it. I don’t give up easily and that has helped me to push the boundaries of what we can do.”
Frey has plenty of short-term and long-term goals. But for now, she is focused on marketing “A Dog at the Zoo?”
“We meet three nights a week with our illustrator (Kit Laurence Nacua), who is in the Philippines, and this book has been totally different because we are watching him illustrate these books live, which has been such a joy,” Frey said.
Kit has become one of our best friends, and through this process with him, as well as with some of my mentors, I have been amazed at all that we can learn in this process.”
For Frey, the learning process includes graphic design.
“When we started, all I knew how to do was to write and tell our story, but little did I know there were so many other elements,” Frey said. “I found myself trying to learn graphic design skills so I could do a lot of the marketing stuff myself.
“That transitioned into me wanting to learn how to format the books myself, and I ended up getting thrown into that for the first book. In the two years since we launched the first book, I’m working with my illustrator to learn how to do animation of our illustrations, and I want to keep learning as much as I can.”
Frey is already making plans for her third book.
All I can tell you at this point is that it’s a Christmas book with the title pending,” Frey said. “ We have so many ideas as a team, and we’ re excited to see where they take us.”
“A Dog at the Zoo?” will be available through www.Alice-Eloise.com and hardcover copies will be will be available on Amazon in 2023.
Locally, the first book is available at Happy Up Inc., 6654 Edwardsville Crossing Drive Suite A in Edwardsville, and at Four Muddy Paws Pet Supplies, 2127 S. State Route 157 in Edwardsville.
The book is also available across the river at the Novel Neighbor in Webster Groves, Betty’s Books in Webster Groves and the Mercy Hospital gift shop.
The second book will likely be available as well at all five retail locations when it is published in 2023.
“ We plan to reach out to zoos across the country to see if they would be interested in having us in their gift shops,” said Frey, who will be appearing at the Leclaire Parkfest in Edwardsville on Oct. 16.
Scott Marion is a feature reporter for the Intelligencer. A longtime sportswriter, he has worked for the Intelligencer since December 2013. He is a graduate of Brentwood High School and the University of Missouri School of Journalism.