Girl, family fight rare disease with painting event at Town Center

Peytan Taylor, 5, is fighting a rare disease (Courtesy of the Taylor family)
Peytan Taylor, 5, is fighting a rare disease, cystinosis. (Courtesy of the Taylor family)

Five-year-old Peytan Taylor climbed up and into the lap of her grandfather and hugged him close. She smiled and reached for his phone.

“She loves taking selfies,” Danny Transfiguracion said.

Peytan put her face next to his and clicked away, smiling at the camera.

“You are the most beautiful thing in the world,” Transfiguracion whispered. He kissed her cheek.

Peytan climbed down and returned to her chair to finish her math assignment. It’s her favorite class.

“She has ballet tonight, too,” said her grandmother, Sherry Transfiguracion.

Peytan likes to paint, especially butterflies, and loves to play with her younger brother, especially outside. She enjoys learning, cooking and watching “Jessie” on Disney Channel.

She also has a small pink box that is filled with containers of colored liquids. Earlier, Peytan had showed it to a reporter.

“This is my vitamin,” she said, picking up a small tube. “This is the orange one that doesn’t make me feel good.”

She paused.

“But it helps get rid of my stomachache.”

Peytan has taken medicine through a tube just above her belly button three times a day since she was 18 months old. She also gets a steroid shot daily and has to take an extra dose of her medication every 12 hours. She has cystinosis, a rare genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body, including the eyes, liver, muscles, and especially the kidneys, according to cystinosis.org.

On Sunday, Peytan’s family will host a painting party at the Hilton Garden Inn at Virginia Beach’s Town Center to raise awareness and money for cystinosis research. It’s called “Paint for Peytan.” For $45, participants get easels, smocks, canvases, paint brushes, paint and a master art instructor.  For every ticket, $15 will go to the Cystinosis Research Network.

As of Thursday, more than 40 people had signed up, and a few spots remained, said Sherry Transfiguracion. More information is on the event’s Facebook page. People can also donate in Peytan’s name through cystinosis.org.

The Transfiguracions, who watch Peytan while her mother is at work, marvel at the strength of Peytan’s parents, Channing and Jamie Taylor, of Chesapeake.

“She won’t give up,” Danny Transfiguracion said. “She will test the doctors, the nurses, the technicians. She will test them, because she’s with her everyday, so she knows. She makes things happen for her daughter, and her dad is equally as strong, so I’m proud of both of them.”

Peytan, a kindergartner at Greenbrier Primary School in Chesapeake, has a strength all her own. She has been to the hospital eight to ten times this year. She has to take eye drops every hour she is awake to prevent cystine crystals from building up in her eyes. Without the drops, the crystals could cause her to go blind.

All of the medication often upsets Peytan’s stomach, causing her to throw up multiple times a week. When her potassium and calcium levels drop she can suffer from severe cramping and spasms in her muscles, causing them to lock up. She is often tender all over from the disease, because her bones are softer than other children, her grandmother said.

“Really, she’s taught us more than we’ve taught her,” Sherry Transfiguracion said. “When I was diagnosed with diabetes a year ago, she taught me how to do the needles, how to be strong, how to be brave, as she said it, with taking all my medicine, taking all my shots. We would do it together — she would do hers I would do mine.”

She paused and, with a glimpse of tears in her eyes, smiled at Peytan.

“’Cause you’re my hero,” she told her granddaughter.

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