Update (December 13):
A baby girl who lived her entire life of just 61 days at Arkansas Children’s Hospital in Little Rock, has died.
Briley Faith Turner was the daughter of Josh and Crystal Turner of Benton.
Earlier this month, KARK brought you the story of her battle against Spinal Muscular Atrophy (SMA).
Click here to visit the online obituary and guestbook for Briley, whose funeral service is Saturday.
Original story (December 3):
Peering through the shades you can see Crystal Turner’s hair swing by her chin, as we wait inside.
She has no idea what’s waiting.
“Oh wow,” she said, stunned walking through the door to a room she doesn’t recognize, despite spending the majority of her days here for more than a month.
This visit to Arkansas Children’s Hospital is unlike any other she will spend with her daughter.
“Did you know? Did you know Briley? ” she asks the tiny baby lying still in the bed.
Briley Faith Turner was born with Spinal Muscular Atrophy (SMA), a rare genetic condition that is incurable. She has been, and will remain, hooked to a ventilator to keep her alive.
“Our daughter’s middle name is Faith,” Josh Turner said. “We didn’t have any idea what that would mean to us when we chose that as her name.”
Briley’s parents were unaware of her condition until she was born.
“Her doctor had never seen a case like hers. He didn’t know what it was,” Josh said.
At one-month old, Briley’s days are numbered. She’ll never leave her hospital room.
“There is no cure for SMA, unfortunately,” said Briley’s primary care nurse Kim Allison. “Her muscles have atrophied. She can’t move her extremities, she can’t cry. Essentially, she’s trapped inside her body mentally without being able to move. It’s devastating.”
With the realization he would never bring his baby girl home, Josh Turner began to think about the memories he wanted his wife and daughter to have here.
“I just started remembering the things Crystal said she wanted to do with her daughter,” he said. “I thought we have to make this happen.”
Katie Clifton, owner of East of Eden salon, heard about Josh’s dream and wanted to make it a reality.
“There’s a lot of memories that we want to create for this family,” she said. “I didn’t do this to get anything back, but by meeting them and doing this — I’ve been blessed.”
She organized a group of businesses to donate clothes for an in-hospital shopping experience, makeup, matching jewelry and a massage for the girls. All of it, available in Briley’s hospital room.
“As a mom of a daughter just knowing the memories I’ve had the honor of making with my daughter, I just want to give that to another mom,” Clifton said. “And God was in charge of all this. He’s all over this day, because every woman I asked for help said yes.”
And it resulted in the girls’ day Crystal and Briley wouldn’t have had otherwise.
“I knew she was loved. I knew I was loved but, man, all this,” Crystal said, taking in the paper lanterns and twinkling lights that had transformed her daughter’s room. “I had no idea. It’s wonderful.”
It’s one day in Briley’s life where breathing tubes and heart monitors play a minor role.
“It’s kind of a great day for her to set that stuff aside and just enjoy,” Josh Turner said.
It’s a day where the spotlight is on fitting memories for a lifetime into the moments they have on hand.
“Briley will eventually be gone, but we’ll have this day to look back on and treasure for the rest of our lives,” Josh said.
SMA is a very rare disease, one that varies in severity. Briley’s case — the most severe. Another Arkansas family experienced the loss of their 3-month-old son Miller last year to SMA.
They created the Miller McNeill Woodruff Founation to garner donations for research to find a cure and to assist other families struggling against this deadly disease. If you are inspired by Briley’s story and would like to make a difference, you can make a donation to that local foundation by clicking the link above.