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Friday, May 6, 2016

Ashley's Story

Sunday, April 29, 2012

Ashley Zavela holds her daughter, Emerson.
*Former Brazil resident recuperating after heart transplant

With one trip to the doctor six years ago, Ashley Zavela's life changed.

After graduating from Northview High School, Ashley attended Indiana State University before marrying.

She and her husband Allen eventually settled in Knoxville, Tenn.

While in Knoxville, she noticed a discoloration on the back of her neck. After several tests, she was diagnosed with a rare genetic disorder called Familial Partial Lipodystrophy (FPLD) or Dunnigan's Syndrome.

According to reports, people with FPLD experience an uncontrolled loss of fat tissue, particularly under the skin.

The imbalance eventually causes fat to accumulate in places where it shouldn't be, such as the blood or organs.

Ashley said the disease is so rare, one person out of every 150,000,000 are diagnosed.

Ashley eventually developed diabetes, but through medication and her doctors, she kept her symptoms under control for a handful of years.

"I have been able to (fight off the disease) with the help of my doctors and good medications," Ashley said.

However, Ashley's heart became damaged throughout the course of battling the disease, so badly damaged to the point where she needed a heart transplant.

Ashley developed an infection and was admitted to Methodist Hospital, Indianapolis, a few weeks ago.

A donor was in line, and the procedure began to provide her with a heart transplant.

The procedure was a success, as Ashley received her new heart April 12.

Shortly after the procedure, Ashley told The Brazil Times she was in good spirits.

"It looks really good right now," she said as she waited on being released from the hospital. "But (doctors) are always doing tests."

She was discharged from the hospital and traveled to Brazil to go through rehabilitation. Currently, she is staying with her mother and stepfather.

Her husband and daughter, Emerson, are staying where the family lives in Decatur, Ill., but plan to visit regularly.

"Luckily, most of my family is nearby so I have a huge support system here that I would not be able to survive without," Ashley posted on her caringbridge.com journal.

Ashley's mother, Kathryn Butt, said finding out about Ashley's condition was welcome, considering the family's history.

In 1982, Ashley's father, Bob, also had a heart transplant. Bob, who was a law enforcement officer, had the surgery in Virginia when he was 28.

However, he died two years later.

Ashley's father suffered through very similar conditions, and his father had also suffered from similar conditions.

"At first, they said there was no correlation between his illness and his father's illness," Kathryn said.

However, opinions began to change when Ashley's father's sister, Karen Richards, began to suffer from the same symptoms. Karen was a kindergarten teacher in the Clay Community Schools system.

"When Karen got sick, they said it was heredity," Kathryn said.

Karen also had a heart transplant and lived for six years before dying.

After learning she suffered from Dunnigans' Syndrome, Ashley said she was relieved to understand the conditions her father and aunt went through.

"My father and aunt both had transplants and nobody knew why (they had to)," Ashley said. "We knew where to go from there. It helped all of us. It was good to know."

Kathryn added she had both her children, Ashley and her brother, Austin, go through regular heart checks as children.

Ashley's brother does not have the rare disease, according to family members.

"It's a blessing my brother doesn't have it," Ashley said.

Since starting her online journal, Ashley updates her story daily, helping her friends and family members understand what she is going through.

For now, Ashley is doing a lot of walking and some strength exercises at her mother's home.

"Right now, I can't use my arms a lot," she said, adding she can't pick up her daughter.

In three weeks, she will begin cardiac rehabilitation at Union Hospital, Terre Haute. In rehab, she will work on upper body strength and more.

"The goal is to pick up my daughter," she said.

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Good luck Ashley - God be with you.

-- Posted by indianamama on Tue, May 1, 2012, at 10:11 AM

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