Last month, Frazer and Dana Gieselmann buried their 6-year-old daughter.

Milla, short for Louise Mildred, had her first seizure at 2 years old. She was diagnosed with Batten disease, a rare and fatal disorder of the nervous system. A few weeks later, her younger sister, Elle, received the same diagnosis. (An older sister, Ann Carlyle, doesn’t have the genetic disorder.)

For the past three years, Frazer and Dana have hauled their two girls to doctors’ appointments, held them through seizures, and watched them lose dexterity. Elle was able to start an experimental medication regimen in September; for Milla, it was already too late.

She turned 6 on November 2. Twenty-four days later, her mother posted, “Milla is with Jesus. Blessed be the name of the Lord.”

While living out every parent’s worst nightmare, the Gieselmanns’ belief in God’s goodness was tested and stretched. Through countless nights waking up with the girls to one bad medical report after another, the couple leaned heavily on the faith passed down from their parents.

And they leaned on the church, hoping it would be there to catch them.

Faith in the Darkness

“People say to us, ‘I don’t know how you do this,’” Frazer said. “But you don’t get to choose. You don’t have any options. If I don’t put cereal in the girls’ bowls, they won’t eat.”

The couple stands on a foundation of generational faith. Both grew up in the church—Frazer in a nondenominational Christian church, Dana in Baptist or Reformed Baptist churches her father pastored. Both attended Christian schools.

“That [background] has been key for us,” Frazer said. “I didn’t realize how much of the foundation had been laid there.”

Even though the theology wasn’t perfectly taught or lived out, “I’m much less critical of my background and much more appreciative,” Frazer said. “God was getting us ready for what we didn’t know was coming.”

Though the church and school background was important, it was God who “guarded our faith all our lives,” Dana said. “God kept his hand on us.”

Milla herself loved praying. So do her grandparents, who get up at 4 a.m. every day to pray. 

“It’s just what we do,” said Rob Richey, the grandfather. A retired pastor and high school Bible teacher, he’s taught many times about God’s sovereignty.

“On this issue of his sovereignty and man’s responsibility, God’s not told us how it fits together, but he’s told us that both [his control and our responsibility] are true at the same time,” Richey said. “What happens when God doesn’t tell us everything, but it’s the truth? We have faith.”

‘What happens when God doesn’t tell us everything, but it’s the truth? We have faith.’

Milla suffered and died far too young. God is good and in control.

Both are true, he said, even though we can’t see how they fit together. But “I believe with all my heart she’s in the presence of her Savior now.”

Because of this, in the darkest time of his life, after not only losing his granddaughter but also watching his child lose her daughter, Richey’s faith holds.

Passing It On

Frazer and Dana are seeking to pass on their faith to their girls. They pray over their children daily, and send Ann Carlyle to a Christian school.

“The school community and families have totally put their arms around us and Ann Carlyle,” Frazer said. “That’s been a huge blessing since she spends so much time there.”

The Gieselmanns’ church has also played an enormous role.

“Through this whole thing, we made a commitment that we were going to keep going to church on Sundays,” Frazer said. “We didn’t want to take a months-long break.”

It wasn’t easy. Sunday mornings consist of keeping an eye on Elle (“You can’t let her get away from you or she’ll seize, fall, and hit her head.”), bathing the girls, and getting everyone out the door by 10:30 a.m.

“We didn’t care what we felt like,” Frazer said. “We made it a priority to be in worship on Sunday because there is something bigger than us. We had to trust God has us there, that he is doing something.”

‘We made it a priority to be in worship on Sunday because there is something bigger than us.’

Worship in a corporate body is “a big deal,” especially when crowded, labor-intensive days mean Dana and Frazer can only snatch small pieces of time for personal devotions. 

The G Team

Corporate worship has been a blessing, Frazer said. It’s one way among many they can feel God’s presence.

The biggest way they feel it: the “G Team.”

“We saw it building that summer [after the girls were diagnosed],” Frazer said. “It started with one person, a friend who gathered another. By October, it was three girls. By December, it was eight people.”

The G Team, eventually comprising 10 friends and family members from four different churches, orchestrate everything from meals—they’ve provided the Gieselmanns with three meals a week for three years now—to a family trust to help defray medical expenses.

They crowded 300 people in for a massive party on Milla’s 5th birthday last year, celebrating a milestone they weren’t sure she’d see. They put out a call for airline miles or private pilots to help the Gieselmanns fly Elle to Ohio every few weeks for treatment. They’ve lined up extra hands at the Gieselmann house every day before and after school.

God has provided in other ways, too. Frazer does commercial real estate loans, and his employer lets him take time off to help with the girls. And for several years, Milla and Elle went to a Parent’s Day Out run by the Gieselmanns’ church, Second Presbyterian in Memphis.

“We made a way in our budget for them to have one-on-one caregivers,” director Shea Deme explained. Milla’s helper was 86-year-old Ms. Melba, who’s been at Second Presbyterian for more than 20 years.

“Milla and Ms. Melba spent the whole day together,” Deme said. “Everybody was willing to help with Milla and Elle so that Dana could have the peace of mind to go to Target knowing her girls were okay.”

Voyage to the Star Kingdom

One of the Gieselmanns’ blessings has spread beyond their immediate family. Almost a year ago, a friend published a children’s book titled Voyage to the Star Kingdom.

In the story, a family must battle a storm of “fierce winds and torrential rain.” While the villagers try to help the family, the waters continue to rise. The Star King sends relief—and also an invitation to his feast. The catch: the two youngest girls are invited first, and must leave their family to travel alone.

Though the book has garnered five stars from reviewers on Amazon and Goodreads, Frazer had a hard time reading it at first. The story is about his family; even the illustrations are based on them.

After the first pass, “I didn’t read it again for a month or two,” Frazer said. “Then I dabbled back in. Now I know it really well. That book has grown so much on me. She [author Anne Riley] tells some of the tenets of faith in such a descriptive and helpful way.”

Voyage to the Star Kingdom is helping others as well. The comments on Amazon are full of small stories attesting to the power of the book’s message.

“We lost our 2-year-old daughter very suddenly last year,” said one commenter. “I cannot begin to tell you what this book has meant to us.”

It’s hard to see God’s plan from the deepest shadows of the valley of death, Frazer said. The road has been “hard and frustrating,” but not without “glimpses of beauty around us from time to time. . . . It’s his story to tell, and we trust him.”