TodayCommunity helps find cure for Perry County girl’s disease
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Alyssa Miesel, 9, center , and her mother, Bonnie Meisel, both of Shermans Dale, chat with Paige Holland, 10, left, and her mother, Michelle Holland, far right, both of New Bloomfield, during the Angels for Alyssa Fundraiser held Saturday at the Silver Spring Fire Hall. (Matthew O’Haren/Special to The Sentinel)
Angels were not only watching over Alyssa Meisel on Saturday, they were lined up at the door of the Silver Spring Fire Co. to support her cause.
They were also holed up in the kitchen making and serving spaghetti, out in the banquet room working raffles, cleaning tables and helping anywhere else they were needed along the way.
Why? To help increase awareness and raise money for medical research for a cure to methylmalonic acidemia, a rare genetic disorder the 9-year-old Carroll Elementary School student was born with.
Methylmalonic acidemia, or MMA, is a disease that renders the body incapable of breaking down proteins, causing acid to build up in the bloodstream.
It requires her to wear a pump that feeds nutrients directly into her lower intestine almost 24 hours a day to make sure she has enough. If not, her body will begin breaking down muscle.
The body’s exposure to extremely high levels of methylmalonic acid means that renal, neurological and gastrointestinal complications can ultimately develop in people with the disorder. During periods of illness or stress, the body naturally speeds up its metabolism, which can cause MMA patients to become very sick.
The condition forced the Shermans Dale native to check into a hospital 13 times during a 15-month stretch from 2006 to 2007.
The first annual fundraiser for the “Angels for Alyssa” fund, hosted by her parents and extended family, sold 375 tickets and brought in more than $15,000 by the time people began walking through the door at 4 p.m. That exceeded the original goal by $5,000 and didn’t even include money from raffles and auction items, which continued throughout the evening as local band Cheap Sneakers entertained the crowd with classic rock music.
“We are very pleased with the response. It’s been phenomenal,” said Bonnie Meisel. “It’s very humbling, the amount of people who have responded to this.”
The big issue for the family is that the disease is so rare, she explained, afflicting only 1 in 25,000 to 48,000 people. It doesn’t get the publicity or the large sponsors to pay for research like cancer and AIDS.
But the family knew that coming in. They realize it’s going to take grass-roots campaigns like this event to make the difference.
“We didn’t sell all the tickets ourselves,” said Dennis Meisel. “We have so many friends and family members that have been pushing these tickets since the beginning of the year.”
Looking out across the crowd, Bonnie Meisel said: “They are guardian angels watching over her. That’s the way we look at it.”
Alyssa, too, was excited about the support to find a cure.
“I hope there’s hope,” she said.
She has grown up with it. She knows how to deal with it, her mother explained.
In 1997, the Meisels lost infant son Blake to the disease. Doctors could not identify what was happening to him quickly enough to save his life. They had Alyssa tested while she was still in the womb.
“I just try to go on with it,” Alyssa said.
Wendy Crawford of Carlisle and Nathan Halvorson of Mt. Holly Springs came out Saturday to support the cause.
“It would be nice if they could find a cure,” Crawford said. “I think it’s wonderful that people volunteer to do this to help others.”
Halvorson said it’s nice to give back.
“We’re just blessed that we have healthy children,” he said.
Both said they felt sorry for families that have to deal with unhealthy children and the medical costs associated with diseases like MMA.
“I hope some type of cure will happen,” added Sandy Forbes of Boiling Springs.
Ella Erford, who attends Zion Lutheran Church in Enola, which is Alyssa’s church, explained she is just hopeful this will make a difference.
“I think of angels as all the people helping, walking around, cooking, serving, cleaning up,” she said. “We’re doing a very small part by eating.”
All of the proceeds from Saturday’s event will fund MMA research at the National Institute of Health in Maryland.
“They’ve been making tremendous strides in the research. We just want to boost them along with that any way we can do it,” Bonnie Meisel said. “We want to see a cure.”
To learn more about the disease process and the research efforts, visit www.mmaresearch.com.
