Groups hold fundraisers to support teen's treatment
By Becky Barclay
Published in News on September 11, 2016 1:45 AM
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Lyme disease and mold toxins confined Mary Lindsey Edwards to a wheelchair. After several months of treatment at a medical clinic in Florida, she is now able to stand and walk a little.
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In this recent photo, Mary Lindsey Edwards is standing, something she had not been able to do for months.
Mary Lindsey Edwards was a typical teenager, full of energy, dancing at a local studio and making plans to attend college.
A couple of years ago, a devastating disease changed all that, putting her in a wheelchair unable to speak and in constant excruciating pain. After months of trying to find out what was wrong with Mary Lindsey, a doctor finally put a name to it -- a combination of lyme disease and toxins from mold.
Today, the 18-year-old is receiving treatment from a clinic in Florida. But it's been an ordeal for her and her family.
"We don't know how long she's had lyme disease," her mother, Kelli, said. "She's been bit at least five times over the years, the first time when she was about in third grade, but never showed the typical rash that comes with it."
But then Mary Lindsey started complaining that her legs hurt. The doctor said it was probably just growing pains.
"After her last tick bite almost three years ago, she had the flu for a couple of days," Mrs. Edwards said. "Then within a month or two, her hips were hurting. The doctors said it was probably from all the dancing she was doing."
The pain spread to Mary Lindsey's neck. The doctors said it was probably stress. Mary Lindsey was 16 1/2.
"We did physical therapy and a chiropractor," Mrs. Edwards said. "We went to different doctors that would do acupuncture and other things, but the pain just wouldn't stop."
It started going down her back.
A year ago this past March, Mary Lindsey was driving home from her classes at Wayne Community College and had to pull over because she got vertigo and a bad migraine.
"We took her to the emergency room and were told it was probably just a migraine," Mrs. Edwards said. "But two days later, we were back in the hospital."
"From then on, we couldn't get an answer on what was wrong with Mary Lindsey. She was getting worse. Her eyes would flutter and her body would twitch and jerk.
"We went to an ear doctor, an eye doctor, a nose doctor and various hospitals. At this point, we'd probably seen about 30 doctors."
Finally a doctor in Chapel Hill ran a lyme test, which came back negative. But that doctor sent Mary Lindsey's results to a doctor in Pennsylvania, who diagnosed her with lyme disease because she had all the symptoms, despite her test being negative.
Mary Lindsey began treatment in Washington, D.C., with oral antibiotics.
"But she got worse," Mrs. Edwards said. "Her speech started slurring. She got stuck on words. She was in a wheelchair and couldn't get out.
"The toxins were building up in her body. And when they kill lyme and all the infections with it, when they die, they release toxins. Her body was full of toxins. The more she was on the oral antibiotics, the worse she was getting."
After being taken off the antibiotics, Mary Lindsey continued to get worse.
Her parents took her to a doctor in Georgia for tests and discovered she'd been exposed to mold, too. And they were also told that their daughter has a rare gene that only two percent of people have, that predisposes her to lyme and mold.
"She was fighting for her life," Mrs. Edwards said.
Researching doctors who specialized lyme disease and mold, the Edwardses came across one in Florida.
"Mary Lindsey had not read about him," Mrs. Edwards said. "But she crawled to me in the laundry room one day and said we need to see the doctor in Florida. I told her he was expensive and we'd have to look into it. She said, "No, something in my stomach is telling me we have to go; he's the only who's going to heal me.'"
The day before Memorial Day 2016, they were on their way to Florida, where Mary Lindsey has been ever since.
The family had to get an apartment a mile away from the clinic, where Mary Lindsey stays -- with help because she can't live on her own. Her mother stayed with her during the summer and now her grandparents, Mary and Wayne Sullivan of Mount Olive, are with her.
"Within a few days of starting treatment, her immune system began trying to fight back," Mrs. Edwards said. "Now she's walking.
"She's being treated with something that pulls the toxins out of her cells. She talks clearly now. She had lost most of her memory and it's back. She's still in pain, but not like the pain she was in."
After finding out that their daughter had been exposed to mold, the Edwardses had their house checked and found they had mold in the crawlspace under their home and moisture in Mary Lindsey's bedroom in the walls and ceiling and in the bathroom.
They are in the process of getting that taken care of before they can bring their daughter home, which includes getting rid of furniture and clothing that has been exposed to the mold.
But in the midst of all the pain she's suffered and being confined to a wheel, Mary Lindsey proved to be a hero to her family.
Back in January, Mrs. Edwards' mother would go to the Edwards home every day to watch Mary Lindsey.
"One day, Mary Lindsey was in the chair struggling to breathe and my mother was talking her through it," Mrs. Edwards said. "About an hour later, my mother fell over and had a heart attack on the floor. Mary Lindsey couldn't walk and her talking was at its worse. But she crawled over to my mother and grabbed our house phone and called 911. If she had not been with Mary Lindsey, my mother would have been home by herself because my dad was gone for the day, and she would probably have died."
Because the Edwardses have to get rid of a lot of their furniture and other items and because insurance doesn't cover the cost of the clinic or the apartment in Florida, local groups and businesses are holding various fundraisers for the family.
Here are the fundraisers that have been planned at this time:
* Mary Lindsey Edwards Benefit and Lyme Awareness show, Oct. 30 from 6:30 to 9 p.m. at Garris Chapel Church, 823 Pine Grove Church Road, sponsored by St. Mary Church, Garris Church and Arbonne. It will feature the Malpass Brothers, Without Further Ado, Casey Bluegrass Trio, Madeline Edwards, Majesty Rose and Artistic Dance Academy. Tickets are $20.
* BBQ plate fundraiser, Sept. 23 from 11 a.m. to 2 p.m., sponsored by Berkshire Hathaway and McMillen and Associates Realty at 1004 N. Berkeley Blvd. Plates are $8. Orders of 10 or more can be delivered. For more information, call 919-778-9500.
* Spaghetti lunch Oct. 16 beginning at 11 a.m. at First Baptist Church of Goldsboro. Free, but donations are requested. Reservations are required no later than Oct. 9 by calling 919-394-8178.
* Drawing for $500 will be held Dec. 15. Tickets are $5, available at Sportman's World.