Zyah Goss-Pittman isn’t your average kid.
The 7-year-old Gainesville girl has spinal muscular atrophy, a genetic disease that weakens her muscles. But that doesn’t stop her from acting like any other child her age.
In fact, the rising second-grader belted out a song from “High School Musical” during a recent interview with her family.
Her mom, Stalena Pittman, said Zyah takes singing lessons once a week.
“If she wants to do it, we do it,” she said. “I put her in everything.”
Letting her daughter participate in average, everyday activities like most children is important to Pittman. Especially since Zyah’s life has been and is filled with challenges other kids her age don’t experience.
Unlike most children, part of Zyah’s daily routine includes wearing a vibrating cystic fibrosis vest twice a day followed by a cough assist machine. The vest helps break up the secretions in her chest while the cough assist machine sucks out the secretions. Zyah also sleeps with a BiPap mask every night to help her inhale and exhale.
The biggest challenge for Zyah and her family is living with the knowledge of her short life expectancy. When she was diagnosed, doctors said Zyah would live only until she was 7 or 8 years old, Pittman has previously told The Times. Zyah will turn 8 in October.
So far, Zyah is defying the odds. And through all of her challenges, she keeps smiling.
Pittman was all smiles, too, following an especially spectacular school year.
“No hospitalizations,” she said. “Very, very good.”
And now that the school year has ended, Zyah is excited for the summer.
Playing Xbox and coloring are part of her vacation plans as well as enjoying her newly remodeled bedroom and a new wheelchair-
accessible van. Both were surprise gifts for the family earlier this year.
Pittman explained her friend and co-worker, Michelle Giddens, submitted Zyah’s name to Ride to Give, a charitable organization that raises money for families with children who are disabled, injured or ill.
“(Zyah) got picked, and they raised the money and got a wheelchair-accessible van,” Pittman said. “This all happened within a month.”
In fact, 928 donors raised $24,500 from March 16 to April 12, according to the Ride to Give website, www.ridetogive.com.
Giddens explained the initial hope was to convert Pittman’s current van into a wheelchair-accessible one and fix the air-conditioning in Zyah’s room. Instead, Ride to Give purchased a new van with lower mileage. On April 22, the family received the new van.
That wasn’t the only gift Zyah received this spring.
Pittman said some of her co-workers gave Zyah’s name to Sunshine on a Ranney Day, an organization that renovates homes for children with special needs. Again, Zyah’s name was picked, and the organization remodeled a room for her.
“We didn’t do any of it,” Pittman said of the process.
Part of the renovation included her brother, Orion Pittman, giving up his room to make Zyah’s space bigger.
“I always give her what she wants,” Orion said as he smiled at Zyah.
On April 3, the renovation started, and it lasted less than a month.
Robin Loose, makeover coordinator at Sunshine on a Ranney Day, said the organization tries to create a room the child can grow in but have a say in the design, too.
“She definitely wanted a princess room,” Loose said. “We basically take what the child gives us and we reach out to one of our designers.”
But none of the makeovers could happen without Sunshine on a Ranney Day’s sponsors and donors, she said.
The donations and work was worth the wait. Zyah’s new bedroom was unveiled May 1.
“Good!” was Zyah’s response to her new room.
And while the new space looks like the dream room of any 7-year-old girl, she said her favorite part is a towel with her name on it in her new wheelchair-
But again, the gifts do not stop there.
Pittman said the house’s air-conditioning will soon be fixed, thanks to a donor from Sunshine on a Ranney Day.
“One of our donors, out of the kindness of their heart, they decided to do it,” Loose said.
Pittman said she received this news in an email after the room reveal.
“Lots of blessings,” she said.
Along with such blessings has been Zyah’s good health.
“As far as her health, she’s been doing awesome,” Pittman said.
A June 20 surgery, however, will interrupt the girl’s summer vacation. The operation will include a back surgery, a hamstring release and injections in her hips.
“She will get the rods out of her back and new ones put in, and she’ll get her hamstrings cut,” Pittman said. “And injections in her hips because her hips are 50 percent out of their sockets on both sides.”
As Zyah recuperates, her mother will plan the fourth annual “Superhero Run for Zyah” set for Veterans Day. Funds raised will help turn the playground at Myers Elementary School into a handicap-accessible area for Zyah.
“She’s the only one in a wheelchair there,” Pittman said. “But you’ve got some autistic, some blind, some with down syndrome. You’ve got all these other special babies, and it’s not equipped for them.”
With the funds it can be a place for Zyah and others to play.