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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.
By Conor Shine (contact) 
Thursday, May 24, 2012 | 2 a.m.
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.”
To the parents of Mercy:
I have a friend who was not supposed to make it. I will let you read his words:
"Once again I am at the VA Hospital in Pittsburgh.
In May of 2005 my file was submitted to the VA in Washington for review prior to the approval (or disapproval) of my transplants (a liver and a kidney). A process that should have had a turnaround of 45 - 60 days.
90 days later I had heard nothing and my inquiry's went unanswered.
120 days later they told me that my tests were too old and had to be re-done.
150 days later I contacted my congressman.
They did nothing for an additional two months.
At this point I was getting a little worried, after all, my life was at stake.
So I decided to see if our then freshman Senator could do anything to help.
I sent his office an email and was surprised when they called me the very next day to ask what they could do to help.
I explained what had been going on up to that point and they said they would be happy to find out what was causing the delay.
Imagine my surprise when they called me again an hour later asking for a fax authorizing them to check my VA files.
Apparently the VA had given them a hard time about giving them any information about me.
I sent it to them about twenty minutes later.
And was further shocked when a couple of hours later they called me back and said a decision would be made within two days.
That turned out to be untrue when the VA called me an hour later with an approval.
It had taken a total of seven months of delays, and one call from my Senator to get final approval.
Since my approval, the liver transplant department at my VA Hospital has not had a single transplant approval.
Not one in three years."
Keep the faith, continue down every avenue you can find, pray, and keep us updated here.
My friend I mentioned, Tony is still alive and licking. He is off the charts for a double transplant survivor. I have known him for over 40 years and talk with him daily. After all of this he is finally working again and just bought a home in southern Illinois, a modest home for sure, but eons above the 275 Square foot closet he had lived in since getting sick. He's a tough guy who is involved in the Big Brother program and was in Iran as a participant of the Iranian hostage crisis in 1980.
I love him like a brother.
Oh, by the way, that Senators name was Barack Obama.
May God Bless everything you touch.
For those who are interested in helping the Doyle Family financially, go to www.ethosministries.com
Effective immediately through Tuesday, May 29th at midnight, Ethos Ministries is giving 100% of donations given through their organization to the Doyle Family to help with Mercy's Medical expenses. Click the "Donate" link on the left hand side of their homepage.
There is a post made on behalf of the family that is covered up by the Sun's website rules. Here is a posting made by Shubach:
For those who are interested in helping the Doyle Family financially, go to www.ethosministries.com
Effective immediately through Tuesday, May 29th at midnight, Ethos Ministries is giving 100% of donations given through their organization to the Doyle Family to help with Mercy's Medical expenses. Click the "Donate" link on the left hand side of their homepage.