BENTON — When Josh Turner of Benton introduces his family, he is always adamant to include his daughter Briley Faith.
“We tell people we have four children,” Turner said. “We have two boys and two girls.”
Briley Faith was born Oct. 11, 2012 — Turner’s birthday — but died 61 days later from spinal muscular atrophy, or SMA. SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement.
Briley Faith was diagnosed with Type 0, which is the most severe form of SMA. Symptoms can often be seen in the later stages of pregnancy, as the fetus is less active than expected. Once born, the infant will have little ability to move and may not be able to breathe and swallow independently. Infants with Type 0 SMA often die before the age of 6 months.
Unknown to Turner and his wife, Crystal, they were both carriers for SMA, despite not having anyone in the family with the disease.
“It is a genetic disease,” Josh said. “I believe about one in 50 adults are carriers.”
Briley Faith spent her entire life in the hospital, first at Baptist Health Medical Center in Little Rock before being transferred to Arkansas Children’s Hospital when she was 10 days old. The couple took more than 5,000 photos and videos in the span of two months, trying to capture every moment possible of their daughter’s short life.
During the interview, Crystal shared a video of Briley Faith raising her arm for a few minutes, one of only the few times she was able to do so.
“We only saw her move her arms twice, and that was the last time,” Crystal said. “I think I felt hope. At that point, we didn’t know she had SMA.
“There was hope. They thought she just needed time for her muscles to strengthen. So seeing her move her arms, it gave us hope. We thought her muscles were strengthening.”
Two days after that, on Nov. 7, 2012, Briley Faith was diagnosed with SMA.
“I went into full mom mode. Despite all my medical training, I thought, ‘OK, she is going to be in the wheelchair, and we are going to take care of her for the rest of her life,’” Crystal said.
“Obviously, that was not the case,” she said.
“I miss my baby girl more than anything,” Josh said, “and the hurt is there every day. But as a believer in a risen savior, I have that assurance that this sin-filled world is not the end.
“The world as we know it is so temporary.”
A year after Briley Faith died, Crystal was volunteering at Holland Chapel Baptist Church in Benton for its annual HereAfter House, in which she was portraying a pregnant woman who — along with her unborn child — died in a car accident.
“Once my character reached heaven, Jesus hands me my baby,” Crystal said. “And I know that is what it is going to be like for me once I reach heaven. Jesus is going to hand me Briley Faith.”
Between scenes that year, a friend pulled Josh and Crystal aside and told them a woman was about to go into labor that night, but she was unable to take care of the child herself. Therefore, if they were interested, the child would be up for adoption, but they had to make a decision by 8 a.m. the next day.
“So we prayed about it that night,” Crystal said, “and we [said to] our son Jude, who was 3 at the time, ‘There is a baby that needs a home. What do you think about us bringing him home?’
“And he said, ‘Let’s do that. Let’s go get him.’”
The Turners were granted guardianship over Reid, who is now 2, the next day.
“Paraphrasing James 1:27, we are told to look after orphans and widows,” Turner said, “so we are following God’s commandments given to us to take care of them.”
The adoption wasn’t finalized until that spring, Crystal said.
And although losing a child, especially a newborn, is unfathomable to some, Josh said, he believes God had a bigger picture in mind.
“I honestly believe that had we not lost Briley Faith, we probably would not have adopted Reid,” Turner said. “So who knows where he would be now, if not for us, and if we hadn’t lost Briley.
“I wouldn’t change it for anything. God had our best interest at heart. That was his plan.”
Along with their son Jude, the couple recently attended an SMA Conference at the Disneyland Hotel in Southern California. The conference brings together researchers, health care professionals and families to network, learn and collaborate.
The family conference includes a variety of workshops, keynote sessions with leading researchers and a family-friendly research poster session.
“Briley had the most severe case [type] of SMA, but there are adults and children who are living with SMA,” Josh said. “It is a fatal disease because right now, there is no cure for it.
“The conference gives us an opportunity to hear from other families and to hear about improvements and steps taken toward finding a cure.”
Turner said he and his wife had been to the conference before, but this was the first time they had taken Jude with them.
“He knows Briley had SMA because we kept him in the know as much as we could,” Turner said.
The Turners have been married for nine years and also have a 6-month-old daughter named Abbott Reese.
“Being a dad is something I had wanted even as a kid,” Turner said. “It is a huge responsibility, and my faith plays a huge part into it.
“I see it as a gift. I turn to God for my faith and leadership.”
Josh is the missions and outreach pastor at Holland Chapel Baptist Church in Benton and has been with the church for the past three years. Kyle Lewallen is the lead pastor at the church.
“The time and attention he gives his family is just a great role model for other dads,” Lewallen, who has four kids of his own, said of Josh. Lewallen has only been with the church for a short time, but it was easy for him to see the joy that Josh Turner has for his children.
“The joy he has in spite of the loss they have experienced as parents — it is unbelievable,” Lewallen said.
Josh was born in Texas but grew up in Hot Springs, attending Lake Hamilton High School, where he met Crystal. They have lived in Benton for the past nine years. Crystal works at the Benton Family Care Center as a nurse and care coordinator.
“He’s a great dad,” Crystal said. “I wouldn’t want anybody else to be the father of my children.”
Josh and Crystal said losing Briley Faith definitely brought them closer.
“There was a moment when we were still at Baptist,” Josh said. “I went downstairs for a walk, and I found this fountain. I sat there at the fountain for a minute and read Mathew 11:28.
“And I when I returned, I told Crystal, ‘One of two things can happen. We can either get divorced, or we can put aside our selfish needs and listen to what God wants us to do.’ …
“We couldn’t help but grow closer as a couple.”
Lewallen said the couple’s hope definitely kept them from going to “the dark side — the hope that there is more to this life, and there is another life to come, the eternal perspective that they have. …
“That’s what you see in them every day. That’s what it is going to come down to.”
Josh is the co-director of Amplify Fest, an annual Christian music festival that takes place in Benton. This August will mark the fifth straight year for the free event, which has had more than 30,000 people attend each time.
Amplify Fest, which will take place Aug. 26 and 27, will feature musical guests such as Newsboys, Matthew West, Building 429, Sidewalk Prophets and 7eventh Time Down. There will also be multiple apparel and food vendors, activities for kids and a fireworks show.
Matt Brumley, who has known the Turners for six years and co-directs Amplify Fest, said Josh is “honestly what a father should look like and what it is intended to be.
“I see a man, who, No. 1, is a fantastic husband to his wife, a fantastic friend to those around him and a loving, caring father to his children …,” Brumley said. “If we had a whole bunch of Josh Turners in this world, the world would be a better place.”
This year, the festival is partnering with The CALL, a nonprofit organization.
“This year, we will also have a second stage in the kids’ area, and The CALL is going to help us with that,” Turner said, “along with several area churches.”
Money raised from the event will go toward the renovation of a house that will be used as a permanent location to accommodate the growing ministry.
Turner’s piece of advice to all fathers is this: “Lean on your heavenly father because he will never let you down.”
“There were times when my own father was at a loss for words after we lost our child,” Turner said. “He didn’t know what to say at times.
“So I would let [God] speak to me. And ultimately, God has the best design, and I have to follow his guidance.”
Staff writer Sam Pierce can be reached at (501) 244-4314 or spierce@arkansasonline.com.