By By Lee Weyhrich
Jeni and Joe Ray of Brewton have been praying for their daughter to have a chance at a normal life.
Their daughter Mary Ellen Ray has been suffering from seizures for six out of the last seven years of her life as well as other brain problems, some of which are the result of being born premature.
Mary Ellen weighed one pound, two ounces at birth. She developed a Grade 4 brain bleed at 10 weeks, which is the equivalent of a massive stroke for an adult.
"It's a brain bleed on the left side of the brain," Jeni Ray said. "She has a little bit of cerebellum, which is the major part of the brain. She doesn't have but half a cerebellum. She has cerebral palsy and epilepsy seizures from the premature birth and brain bleed."
Two procedures could help with the seizures. A Vagus nerve stimulator would basically work as an off switch to stop seizures after they have occurred. A more expensive treatment, known as focal resection, involves pretty much rewiring the part of the brain that causes seizures.
"Next week she's going to have some tests done to see if she is a candidate for focal resection," Joe Ray said. "As far as I know it (the surgery) will be in Birmingham at Children's Hospital. Basically if they can pinpoint a section of the brain that is triggering the seizures they will be able to basically drill a hole in the skull and repair the damaged tissue that is causing the seizures to come up. We'd kind of prefer to be able to do the resection because that would eliminate a majority of her seizures altogether.
"The Vagus will stop one after it has occurred," he continued. "The focal resectioning will actually reduce the number of seizures she has. If it turns out she's not a candidate for focal resection Vagus is a good alternative to stop a seizure after it starts."
Neither procedure comes cheap.
"Right now we don't have anything real definite as to how much it will cost, it starts out at $20,000 and goes up from there," Joe said. "Some of it will be covered by Medicaid, but I don't know how much."
According to Jeni the Vagus nerve stint starts at $20,000 and a resection could cost as much as $200,000.
For that reason family friend Linda Bumann has helped to raise money for the family by opening the Mary Ellen Ray Benevolent Fund at First National Bank. The last time she checked that account, $6,000 had been raised for little Mary Ellen's surgeries. A sizeable amount, but well short of even the cheapest treatment.
"I first met Jeni, I guess in 1995, when I had an Avon store downtown," Bumann said. "She was reluctant to let me meet her little daughter because I guess she was ashamed to let people see her daughter until I told her I also had cerebral palsy. I had jerking motions when I was in grammar school in New York. I was told later they were seizures, but I didn't know what they were and at the time no one else did either, but I grew out of them."
As Mary Ellen gets older, her seizures worsen. At this point the surgery is almost a necessity. Bumann held a yard sale Saturday at her house to help pay for whichever surgery Mary Ellen qualifies for.
"I set up an account for Mary Ellen at First National and I was trying to think of more ways for my Avon unit to raise money for her," Bumann said. "We're hoping to raise as much as we can. They do have insurance, but we're hoping to raise as much as we can because the nurses said the more we can raise the better and I was praying that people would contribute (to the yard sale) and thank God for everything that was given. God had Mary Ellen here for some reason or other. This is something that we couldn't let the poor little girl have seizures the rest of her life."
Bumann believes it was no mistake Mary Ellen was brought into her life.
"When I saw her I said she was a cute little girl, she just needed some medical attention and needed some help," Bumann said. "I also thought God brought us together for me to help this girl."
Bumann has adopted the Ray family in many ways.
"I know her mother has a lot of faith," Bumann said. "They seem to be a loving family. Jeni believes that family comes first, which is a good quality I think. Mary Ellen loves her daddy. She is going to Rachel Patterson School, so she is enrolled in school and she is a happy child. She knows who cares about her."
Mary Ellen has already come farther than anyone could have hoped, but there have been some setbacks.
"She can walk now and the doctors told us she'd never be able to," Jeni said. "She's also learning to talk."
Mary Ellen is on five medications at adult dosages, one medication was actually causing the already small child to lose weight.
"She has a feeding tube," Jeni said. "She was not gaining weight. On June 1, 2004, she was at 19 pounds and now she's up to 40 pounds."
Jeni believes a lot of her daughter's success can be attributed to Mary Ellen's school teachers.
"Her teachers are wonderful at Rachel Patterson," Jeni said. "They have been wonderful with her. I love Rachel Patterson; they are wonderful with children with disabilities. I would like to thank them for everything; the prayers, the donations and everything else. I'd also like to thank the whole City of Atmore and the surrounding communities."
The Ray's appreciate everything the community of Atmore has done for them.
"I'd like to thank everybody that's shown an interest in helping out and we do appreciate it," Joe said. "Anyone interested in helping out we would appreciate it. We want people to pray for us mainly."
To contribute to Mary Ellen's surgery contact First National Bank of Atmore at 368-3148 or visit the bank and ask about the Mary Ellen Ray Benevolent Fund: 312/377-1.