Caitlin and Dallin Naulu’s home is silent. It creaks and groans in the wind and settles under the weight of snow on the rooftop, but it’s missing the comforting beeps of the monitor that recorded their daughter’s heartbeat.
“When the van came to pick Auni up after she passed away, we sat on the porch swing and watched as it drove away,” Caitlin says. “After it left, I turned to check her numbers on the baby monitor before remembering she’s not here anymore.”
In early 2014, when Auni was six months old, Caitlin and Dallin took her to a neurologist because Auni still couldn’t sit up on her own. They settled in for a long road of testing and uncertainty, but the answer came back quickly. It was the one outcome they decidedly ignored during late night Google searches. Auni had spinal muscular atrophy, a rare genetic disorder that affects the motor nerve cells in the spinal cord, preventing muscle movement and development. As a type 1 patient, Auni would never be able to sit up, crawl or walk, and would likely not reach her second birthday.
“We were in a fog for a few months,” Caitlin says. “We were grieving the diagnosis and finding a new normal while trying to be there for her.”
They learned how to give Auni breathing treatments, met with medical specialists and navigated insurance changes. Dallin adjusted his work schedule and Caitlin delayed finishing her special education degree so they could spend every moment possible with Auni.
That’s when community generosity began pouring in. It started with family, when Dallin’s sister and dad threw together a fundraising breakfast the week Auni was diagnosed.
[pullquote]“We looked like a normal couple on a date. No one would have known that we lost our daughter hours ago.” —Dallin Naulu[/pullquote]
The Cure SMA foundation helped by sending care packages full of items for SMA children, along with a custom binder to help the Naulus keep track of important documents.
Then the Spanish Fork softball team hosted bake sales and the Spanish Oaks Golf Course where Dallin works organized a 5K and a golf tournament. A Spanish Fork drink stop, Sip-N Spot, made a drink called “Auni” — Sprite with peach puree, a pump of strawberry and pineapple, and a slice of fresh lime.
One anonymous friend left a basket of food and $1,000 in cash on their doorstep. A GoFundMe account raised more than $10,000. After Auni passed away on Sept. 11, 2015, the Spanish Fork High School football coach, who Dallin had played for, held a blackout game and fundraiser for the Naulu family.
“It’s been hard to be on the receiving end of so much service, but it has changed how we treat others,” Dallin says. “Right after Auni passed away we were in Lehi having lunch, and we looked like a normal couple on a date, talking and laughing here and there. No one would have known that we lost our daughter hours ago. It showed me you never know what people are going through.”
Now as Caitlin and Dallin grieve their loss, they’re creating a community of support for SMA families. They plan to keep holding the “Anything For Auni” golf tournament and donate to other families in need.
“Sharing our story has helped us grieve,” Caitlin says. “Our hearts are shattered, and we want to be there for families who are going through it, too.”