Three-year-old Zoey Dillon’s blond hair whipped back as she zoomed around the living room in her hot-pink electric wheelchair.
She grinned and disappeared into the hallway.
“I’m hiding,” she said.
Playing in her wheelchair is the way she keeps up with other children, the ones who don’t have a rare genetic disorder, her mother said.
Zoey, the daughter of DeAnna and Sean Dillon of Conway, has spinal muscular atrophy type 2.
“It is a genetic disorder where she is missing the gene that tells your muscles to move and grow and function,” DeAnna said.
DeAnna, 28, said she knows of only one other child in Arkansas who has the disorder.
Zoey’s diagnosis took about six months and lots of tests at Arkansas Children’s Hospital, DeAnna said.
Zoey was fine when she was born.
DeAnna said she and Sean, 33, noticed a change when Zoey was 1.
“She was doing the normal, typical stuff of cruising and walking along the side of the couch, but then we realized she wasn’t standing up in her bed to greet me in the morning. She was just sort of lying there,” DeAnna said. “I knew at that point something was wrong.
“They originally told us they thought it was a tumor in her spine and her brain. Then we got this news.”
“It was kind of overwhelming,” Sean said.
The diagnosis was heartbreaking.
Although Zoey can move her hands and
operate her wheelchair, she can’t walk, and eventually, she may lose the ability to move her arms.
“There’s a second gene that acts as a backup gene. She has enough of that backup gene that, right now, she can still sit up and crawl. But as she gets older, that backup gene can’t regenerate,” DeAnna said. “As we go, she’s going to regress further.
“The fact that we’ve made it to 3 is amazing. My hope is that we can get her trained with eye movement before she loses the arm movement.”
Zoey has scoliosis, a curvature of the spine, and weakness in her lungs makes it necessary for a machine to help her cough.
Winter is a tough time, DeAnna said, with the rampant flu and cold germs.
“We have different shirts or sweaters we put on when we pick her up from school,” she said.
Respiratory illnesses are the No. 1 cause of death for someone with Zoey’s condition, DeAnna said.
According to the Families of SMA website, to have SMA, usually both parents are carriers of the abnormal gene.
“We had a one-in-four chance of having a child with this. We knew nothing about this because it did not affect us,” DeAnna said.
The couple also have a son, Aidyn, 7.
“My son, we have not gotten tested — A, because it’s expensive; B, because we want him to fully understand why we’re getting him tested, to see if he is a carrier or if he has it,” DeAnna said. “The onset can be up until you’re 50.”
When Zoey gets taller or gains weight — she’s finally made it to 26 pounds — she has to relearn to crawl, DeAnna said.
“Her mental capacity is perfectly fine. It’s all physical,” DeAnna said. “She’s cheerful; she loves life. She is the happiest kid. To watch her go through doctor’s appointments and things with them poking her and messing with her, she never cries. She is the happiest little girl; she is the best kid ever. I admire her for going through it all.”
The Dillons said they don’t treat Zoey differently than their son.
“We adapt to any situation pretty well,” Sean said. “We can still play games and play with toys.”
“We just sit on the floor,” DeAnna said.
“My toys are in my room,” Zoey said. Her favorite is a Barbie “from Santa,” she said, and a stuffed Minnie Mouse that the SMA support group sent her.
Although insurance paid for Zoey’s wheelchair, the Dillons are raising funds for a wheelchair-accessible van.
DeAnna is network administrator for the Faulkner County Library in Conway, and Sean works at Mike’s Place Restaurant in the city’s downtown.
Donations can be made to Zoomin’ With Zoey at any U.S. Bank location, DeAnna said.
Also, at www.gofundme.com, the family has a fundraising page, which is Wheelchair Van for Zoey. It has Zoey’s story, along with photos of her.
The goal is $55,000 for a used van. To date, about $3,850 has been raised, DeAnna said.
She said sitting in a car seat is painful for Zoey, “so that’s the other reasoning behind needing the wheelchair van.”
DeAnna’s mother, Sylvia Wheeler of Conway, watched her granddaughter show off her wheelchair.
Wheeler said Zoey’s personality “is so different” when she has her chair — she’s much more outgoing.
Wheeler said she has a van with a makeshift wheelchair ramp.
In desperation, they bought a four-wheeler ramp and had it welded to fit the van.
However, someone has to drive the wheelchair up into the van while someone pushes it.
If it’s raining, it can’t be done, and it’s heavy, DeAnna said.
She said deacons from the church her mother attends, Woodland Heights Baptist Church, built a ramp from the family’s laundry room into the garage, which was converted to a playroom.
The couple get emotional support from an SMA support group, Families of SMA, and attended a convention in California in June.
They met people in their 50s and 60s who had one of the types of spinal muscular atrophy.
“One guy moved his wheelchair by clicking his tongue,” DeAnna said.
Some of the adults had jobs with places like NASA, she said.
“We realized this is not the end; these people have three and four master’s degrees. I thought, ‘OK, there is hope.’ I can expect her to do exactly what I expect my son to do,” DeAnna said.
Zoey has chores — from her wheelchair, she helps put silverware into the dishwasher, helps put clothes into the dryer and likes to sweep, her mother said.
“We try to keep things as normal as possible,” Wheeler said. “She is going to have to have people helping her when she’s old; she needs to be a nice person and know how hard they work.”
Zoey gets occupational and physical therapies at Pediatrics Plus Therapy Services in Conway.
“We love them there; they are wonderful. I cannot say enough good things about them.”
“The goal is to maintain what muscles she has. It eventually will break down and degrade,” DeAnna said.
In March, her parents will take Zoey to Dallas to see a specialist in spinal muscular atrophy.
“We want to try to get in on some of the breaking new treatments and be part of the research,” DeAnna said.
The family has had to readjust their expectations for their daughter’s future.
“I quit asking at work, ‘How old are you, cutie?’ because I didn’t want to have a child to compare. OK, my child can’t go run to the slide. … She won’t be able to be the ballerina or the cheerleader that you expect her to be,” DeAnna said.
“I don’t want to expect the worst,” DeAnna said. “We take it a day at a time, and sometimes minutes at a time.
“My main thing is, I just want her to be happy.”
Wheeler agreed.
“It’s so easy not to get discouraged because she just smiles at you,” Wheeler said. “She’s not upset, so why should you be?”
Zoey hugged her Minnie Mouse doll and zoomed away, smiling.
Senior writer Tammy Keith can be reached at (501) 327-0370 or tkeith@arkansasonline.com.