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August 28, 2014

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Prayer for Mercy: Henderson family seeks a cure for 6-year-old’s unique condition

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Leila Navidi

Mercy Doyle, 6, visits with Tina Lindquist, the program director at Brain Balance Achievement Centers in Henderson on Wednesday, May 23, 2012. Doyle has been diagnosed with the rare neurological disorder Opsoclonus Myoclonus Syndrome.

Mercy Doyle

Mercy Doyle, 6, visits Brain Balance Achievement Centers in Henderson on Wednesday, May 23, 2012. Doyle has been diagnosed with the rare neurological disorder Opsoclonus Myoclonus Syndrome. Launch slideshow »

Six-year-old Mercy Doyle is like a lot of girls her age.

She loves coloring, swimming and “The Little Mermaid.” She looks up to her big sister and finds her younger brother kind of annoying.

But to doctors in Nevada and around the country, Mercy is a medical mystery, a child with a unique set of symptoms they’ve never seen before.

Mercy’s medical odyssey began seemingly overnight, her parents say, four years ago during a family vacation to the beach in California.

“She kept falling in the sand. She couldn’t run around. She was shaky. It was weird,” said her father, Kevin Doyle, a worship pastor at Green Valley Christian Center.

Her family rushed back home to Henderson, where Mercy was diagnosed with a viral infection that was attacking her brain. After a few months, her condition seemed to be improving. Then her symptoms worsened again.

She developed ataxia — a neurological condition resulting in the loss of muscle coordination — and tremors in one of her feet. Mercy continued to deteriorate, to the point where she lost the ability to walk and crawl and had to use a wheelchair.

Desperate for answers, the family began seeking out doctors. After several years visiting some of the leading pediatric neurologists in the country, Mercy has received four different diagnoses, none of which completely describes her condition.

“(Mercy’s) pretty unique unto herself. You’re not going to find anyone with this same combination of symptoms,” said Dr. Wendy Mitchell, acting division head of neurology at the Children’s Hospital of Los Angeles.

Mitchell, one of Mercy’s lead doctors, says it appears that Mercy has an auto-immune disorder that is at the root of her disease.

“It seems her own immune system is attacking various parts of her brain,” Mitchell said.

Although Mercy’s condition parallels other rare illnesses seen in children, several increasingly exotic treatment regimens, including immunosuppressants and low-dosage chemotherapy drugs, have yielded little effect.

“There’s nothing like a guidebook on what to do for this,” Mitchell said. “There’s nothing made for this; there’s not one drug for this.”

The most promising results have come from a treatment of corticosteroids, which have restored Mercy’s ability to walk, although she still relies on a walker for long distances.

But the treatment has come with side effects — including weight gain, trouble sleeping and mood changes — that have doctors still searching for a better option.

“Now we’re taking medications to treat side effects of other medications,” Kevin Doyle said.

Mercy’s journey has taken an emotional and financial toll on her family, her mother Camie Doyle said, but their faith and refusal to give up the fight keeps them moving forward. A strong network of support from their church community and friends, who help cook meals and babysit for the family’s other children, has also kept the family afloat.

“It feels very hopeless, but we’re believers,” said Camie Doyle.

The cost of traveling to visit doctors in California as well as buying medicine, walkers, specialized shoes and other medical equipment adds up quickly. It set the family back an estimated $10,000 out of pocket last year.

To help cover those expenses and the cost of new therapy that Mercy is beginning at the Brain Balance Achievement Center in Henderson, the family is hosting a fundraiser Sunday at Color Me Mine at the District at Green Valley Ranch.

“It’s been truly a humbling experience. We feel so blessed by everyone who gives. It’s not just money, it’s their time, their talents, their resources,” Camie Doyle said. “Hopefully one day we’ll be on the opposite end.”

With no answers in sight to what’s ailing Mercy, the family is continuing to press on through trial and error, seeking out new treatments and praying they find a solution.

“We take it a day at a time. But sometimes it’s not even a day. It’s hours at a time, or even minutes at a time,” Kevin Doyle said. “We can’t stop fighting. ... Every rock needs to be turned over.”

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