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Laura Sylvester, left, talks with her daughters Hannah, middle, and Haley in Haley's new safe bed. Haley is allergic to protein and was diagnosed with acute food protein-induced enterocolitis syndrome in 2014. 


Haley Sylvester, 3, has spent the last two holidays with her family -- something her mother, Laura, said used to not happen.

Haley was diagnosed with acute food protein-induced enterocolitis syndrome, also known as FPIES, in June 2014. Her reaction to food includes vomiting and diarrhea, and she eats through a pump with the help of her "tubie" in her stomach. She celebrated her second "tubie birthday" April 7.

She has also been diagnosed with Autism Spectrum Disorder.

Because of her unique lifestyle, Haley and her family have had to shift the focus from food onto other aspects. Laura said this is particularly hard on holidays.

For Valentine's Day, Haley and her sister, Hannah, who is in first grade, dressed as fairies and decorated cards -- without candy. On Easter, Laura said the family focused on the holiday's religious aspect instead of the Easter bunny hopping along with baskets of candies.

To help with Haley's different lifestyle requirements, the Sylvesters have recently received three pieces of specialty equipment: a safe bed, a stroller and a "special tomato."

Haley's new safe bed includes features that make her nightly feedings easier on her and her family. Compared to the portable IV stand that used to stand by her old bed, the new bed has an attached IV stand and an opening that allows Haley to move while she sleeps and not disturb the feedings.

"If she pulled it, sometimes it would knock over even if she was just wrapped up in the tube," Laura said.

She said the old bed did not work for her active child, and the IV stand was cumbersome and a hazard.

"It has been the biggest blessing I have ever experienced," Laura said.

With padded walls and window panels that her parents can put on the open side of the bed, Haley's new bed keeps her safe. Laura said she has been trying to get the safe bed, which cost about $13,000, since her younger daughter was diagnosed with FPIES.

Haley's father, Richard, said the bed grants them "peace of mind," and Hannah said the bed helps her sister sleep better.

Haley's other new equipment helps her beyond the bedroom. Her special tomato soft-touch sitter, which her father said she loves, helps her calm down when she is having a meltdown, Haley's nurse Jennie Cameron said, as the sitter's material helps ease Haley.

As the soft-touch sitter has wheels on the bottom, Hannah loves to push her sister around the family living room, especially while the duo sings Maroon 5 songs.

"She loves it," Jennie said.

Haley's new stroller, which can adjust sitting angles and has a feeding tube stand, has helped reduced the risk of Haley having food exposures when she goes to the grocery store with Jennie or Laura because she does not have to sit in a shopping cart.

"This thing to me is a godsend," Jennie said. "It's wonderful."

But Haley has not been well enough to be able to fully enjoy the freedom she can have with her new stroller. On Feb. 12, Haley became violently ill, but help from her new doctor Dr. Karen Carter with Augusta Developmental Specialists, she is on the mend.

Although that was not the sickest Haley has been, Laura said everyone including her brother, Larry Gillian of Anderson, were worried. Haley and her family have been spending more time with Larry and his 8-month-old daughter Ava recently. Laura said having Ava and Larry in their lives has been a form of healing.

Laura said her younger daughter has been sick on and off since then, and they are hoping for her to improve soon.

 

Contact Mary Kate McGowan at 864-223-1812 or follow her on Twitter @IJMKMcGowan.