18-year-old keeping positive attitude despite having rare disease
Callista Pearson, Deseret News
MAPLETON, Utah County — Haley Stonehocker never expected to spend her senior year lying in bed, but that's the situation she finds herself in as she struggles with a very rare disease.
Back in January, she had what she thought were cold-like symptoms, but her condition got much worse, confining her to her bed and forcing her to eat through a feeding tube. It was a drastic change for a girl who was active in school and had been a standout on the track team.
Doctors have since diagnosed her with gastroparesis, a rare condition where her stomach is essentially paralyzed and her body cannot digest food. There is no cure.
"It's really unusual for a teenager to get it, for her it was idiopathic, it just came on as a virus," said her mother, Cynthia Stonehocker. "She went from being an active teenager to one who lays in bed all the time."
For now, she is stuck in bed hooked to the feeding tube keeping her nourished. She has a new dog, Hershey, who keeps her company while she's trying to keep up with friends over social media. Still, Haley and her family remain optimistic her condition will someday improve.
"I was really busy before I got sick and when I got sick I was really surprised at how many people have reached out to me," she said. "I had no clue that I had so many friends — people who I never would have expected to reach out."
Classmates like Randy Roberts, also a student at Maple Mountain High School, often visit Haley at her home, to help her feel included. Even though Haley couldn't have imagined spending her senior year of high school sick in bed, she remains optimistic her condition will someday, get better, and her family hopes for the same, encouraged by her strength.
"She really knows she is going to beat this and she is very positive and upbeat, even though she is in constant pain," said Eldon Stonehocker, Haley's father.
Since her illness, the Stonehocker family has felt a shift in priorities and a change in their view of their life. Their focus is much more on family members than before, and they say they are inspired by Haley's strength and courage, in particular.
"It's changed our focus about what's important in life, family really is what matters," said Eldon Stonehocker. Looking for some relief for the teenager, Haley's doctors are working with a hospital in Ohio. They are researching the possibility of implanting a gastric stimulator that has proved successful in helping others with this disorder.
"She would really like to get up. She said, ‘even if I can't be 100 percent, I would be really happy with an improvement, just to be able to get up. I would be OK with a feeding tube my whole life, but if they could help me to have the nausea go away and reduce my pain, and make it so that my stomach would work a little bit, [I] would be so happy,' " said Cynthia Stonehocker.
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