“A story came to me,” she says. “That night I was writing it in my brain, and I wrote it all down the next morning.”

Epkey, a parishioner at Most Holy Trinity parish in Fowler, had noticed many books aimed at young readers feature characters who don’t exemplify Catholic values, she says, and she’d been looking for an alternative — especially short chapter books for young readers.

That middle-of-the night idea became her first book, Gracie Glory and the Saint Stories, which features a first-grader learning about saints and the faith through ordinary childhood experiences. 

Epkey’s most recent book, Gracie Glory Learns about Saint Margaret of Castello is particularly special, as it features a character named Josie, who is based on Josie Platte, a 3-year-old Saranac, Michigan, girl who was diagnosed at 9 months old with infantile Sandhoff disease, a rare, genetic, terminal illness. 

Josie’s parents, Chase and Lani, both formerly parishioners at St. Mary parish in Westphalia, say she began developing normally as an infant, but at around 5 or 6 months old stopped hitting developmental milestones. 

“She slowly started losing some skills,” Chase says. “She could roll over, and then she stopped. She couldn’t crawl, and she started struggling with eating.”

After seeing several specialists, Josie was diagnosed with infantile Sandhoff, which is in a family of diseases like Tay-Sachs disease. An enzyme deficiency causes destruction of nerve cells in the brian and spinal cord. After she was diagnosed, Chase and Lani learned they are both carriers of the disease, and that there is a 25 percent chance that any child they have will inherit it. 

Within a month of her diagnosis, Josie’s abilities began to decline quickly. She cannot eat, swallow, or move on her own. She gets around in a medical stroller and can make some noises and facial expressions to express joy, frustration, or discomfort.

The Plattes, who grew up in the Diocese of Lansing, have found a community of other families with children who suffer from Sandhoff disease, but they don’t know of any other cases in Michigan. 

“This disease has a life expectancy of two to four years,” Chase says. “Of the families that we’ve met, a lot of their kids have passed away already.”

Josie has a little sister, Kaira, who will turn one in May and does not have Sandhoff disease. 

Coming to terms with Josie’s diagnosis was challenging, the Plattes say.

“Learning, especially when she’s not even a year old, that your child is going to pass away within a few years, and you’re going to have to watch them suffer is really earth-shattering,” Chase says. “It really took a while to sink in.”During this time, Josie’s great-grandmother, Christine Piggott, won a basket of Epkey’s books at a fundraiser, and the prize included a certificate for the winner to write a book with Epkey. Piggott knew just which little girl the story should feature, Lani says. The resulting story sees Gracie Glory attend a daddy-daughter dance, where she meets a girl in a wheelchair named Josie. Josie helps Gracie learn that a person’s true beauty and worth comes from their heart, not their outward appearance. 

Margaret of Castello was an Italian girl who lived in the 13th century and suffered from several physical disabilities. Her parents abandoned her at a Franciscan shrine after their visit there did not result in miraculous healing. She was taken in by the community and eventually became a Third-Order Dominican. She lived until age 33, was canonized in 2021, and is the patron saint of the disabled and blind. 

Epkey and the Plattes have begun visiting schools in the Lansing Diocses, where they talk about Josie, her challenges, and how her family has been blessed by her life.

“They want her to be a saint,” Epkey says. “The kids are really accepting and they listen so intently and ask sweet questions.”

While Josie has not been miraculously healed through prayer, her life has been a miracle in another way, according to her parents.

“We finally had to recognize that the miracle happening is not the miracle we prayed for, it’s that people’s hearts are changing and they are falling more in love with God because they have seen her,” Lani says.

Despite her disabilities and thanks to advocacy by their parish priest, Josie was able to receive First Holy Communion and confirmation, which the Plattes see as one of the many blessings in Josie’s life.

“When you are open to life, it means you are open to having your heart walk outside of your own body,” Lani says. “It’s going to be shattered, and you know that, and not necessarily in the way you expect. God is asking us to minister to and walk with Josie on her way to heaven. That’s the greatest gift you can give your kid. As painful as it is that it’s coming so quickly, it’s the greatest gift.”

Learn more

To explore all Gracie Glory and Vinny Virtue books, please visit https://jennaepkey.com.