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Six-year-old Gainesville girl lives with genetic disease and still stays positive
Zyah Goss-Pittman diagnosed with spinal muscular atrophy at 15 months old
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Zyah Goss-Pittman, 6, shows off a tablet she uses to answer questions in class Monday at Myers Elementary School. Zyah was diagnosed with spinal muscular atrophy at 15 months old, which is a rare genetic disease that attacks her muscles. - photo by Erin O. Smith

Zyah Goss-Pittman is just like any other 6-year-old.

She gets all As in school, asks to play games on her mother’s smartphone and plays with Barbies. She also enjoyed going to the circus and having her face painted in February.

The only difference is Zyah and her family has a few extra steps to do each day to ensure the first-grader is healthy.

Zyah has spinal muscular atrophy, also called SMA, which causes muscle weakness throughout her body. SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement, according to the Muscular Dystrophy Association’s website. With the disease, muscles do not receive signals from the nerve cells, which are located in the spinal cord. Since the muscles are inactive, they decrease in size over time.

According to the SMA Foundation website, the leading funder of SMA research worldwide, children with SMA generally appear normal at birth. Symptoms develop as early as a few months after they are born, but often overlap with other neuromuscular diseases. Therefore, diagnosing SMA can be challenging for a non-specialist.

Stalena Pittman, who adopted Zyah when she was 5 months old, did not realize her youngest daughter was having serious problems.

“If there were signs, I didn’t know them because I didn’t know what the disease was,” she said.

Ten months later, she knew.

Zyah had been running a constant low-grade fever that developed into pneumonia. Pittman rushed her daughter to the hospital.

Turns out, Zyah’s left lung had collapsed. That’s when a pulmonologist discovered the 15-month-old had SMA.

Pittman learned her daughter’s muscles were so weak when Zyah was sucking on her bottles, she was breathing liquid into her lungs. It caused her pneumonia.

Genetic testing revealed Zyah was missing a gene for her motor skills, explaining why the child never crawled.

Pittman also learned Zyah’s other health issues, including her respiratory problems, were related to SMA. It also explained why Zyah has a bell-shaped chest. This deformity keeps her from having the extra support to breath as well as she could.

But the scariest news of SMA was Zyah’s life expectancy. Doctors said the little girl would live only until she was 7 or 8 years old, Pittman said. Zyah turns 7 on Wednesday, Oct. 12.

However, Pittman and Zyah are doing everything they can to fight the disease. Twice a day, Zyah wears a vibrating cystic fibrosis vest to help break up the secretions in her chest. Afterward, she uses a cough assist machine to suck out the secretions. If Zyah’s sick, the process has to be done four- to six-times a day.

While average children can fight off a cold with rest and maybe medication, Zyah cannot.

“A cold can put her in ICU,” Pittman said, adding hospital visits are normal for the little girl. “The flu put her on a ventilator two years ago about this time twice.”

Daily activities also take more effort. Zyah is fed through a tube. At night, she sleeps with a BiPap mask, which is the similar of CPAP because she has sleep apnea. A CPAP, or continuous positive airway pressure, is a treatment that uses mild air pressure to keep the airways open. BiPap delivers an inhale pressure and an exhale pressure.

“But God is good,” Pittman said. “We have our ups and downs ... There’s a whole lot of stuff that she has to do, but we still try to keep her as normal as possible. I don’t let them baby her.”

Part of Zyah’s normalcy is attending Heather Bagley’s class at Myers Elementary School on Candler Road in Gainesville.

“(Zyah) does awesome. She’s a really great listener, always following directions, gets her work done,” Bagley said. “She’s always so positive, always has that beautiful smile on her face and she’s always on top of it.”

Besides having her nurse, Barbara Zona, with her in class, the 6-year-old is not treated any differently.

Zona said she tries to stay out of the way, only stepping in if a medical issue arises.

Myers Elementary Principal Beth Hudgins said Zyah is well-loved by her classmates — who have given her the nickname “Beautiful” — and credits the girl’s family for her success.

“She is one of the gang. She’s amazing, but her family is what makes her amazing,” Hudgins said. “She doesn’t come in with any expectation that she gets things because she’s dealing with so much.

“ ... (and) her family is just incredible support everywhere she goes and I think that’s why she’s done so, so well.”

Because of the supportive community, Pittman said Zyah is thriving. She described her youngest daughter as having a huge personality. Zyah also picks up on habits from her three teenaged siblings.

“She’s six going on 25,” Pittman said.

Her family also encourages Zyah to explore different activities and interests. To that end, she’s had an array of different pets and loves playing Xbox with her siblings. Zyah also has been a Gainesville Parks and Recreation cheerleader and has won the Little Miss Johnson pageant twice.

One time Pittman even tried to take Zyah roller skating at her daughter’s request. After giving it a try, Zyah told her mother she didn’t think it was going to work.

“If she says she wants to try it, we try it at least once,” Pittman said.

Pittman and her family also try to raise awareness about SMA. In August, they held the third annual run to raise awareness and funds for the disease. But Pittman said after the cost of putting on the race is paid, not a lot of money is left.

That is not deterring them from spreading news about SMA. Pittman said more people are getting diagnosed with the disease every day. One in every 6,000 to 10,000 children is born with the disease, according to the SMA Foundation.

“It’s not a death sentence, you just have to be diligent and not give up,” she said.

For now Pittman is grateful for her daughter, who continues to enjoy activities that make her smile. Those include trips to the movies and BabyLand General Hospital in Cleveland.

“I could be biased because I’m mom, but I just think everybody that meets her falls in love with her,” Pittman said. “She’s definitely a blessing.

“We don’t do pity. We don’t cry. We don’t whine about our situation. We just try to work our way around it.”

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