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Decatur family raises awareness for mitochondrial disease
by Sarah Anne Voyles
svoyles@neighbornewspapers.com
September 18, 2013 02:13 PM | 1513 views | 0 0 comments | 28 28 recommendations | email to a friend | print
About nine years ago, Decatur residents David and Laura Green learned their 2-year-old daughter Ellie was born with mitochondrial disease.

The Greens became concerned about their daughter when she was 6 months old and delayed in developing.

“The hardest part is figuring out what is going on with your child,” Green said. “We began to see different neurologists and it was not until we saw a neurologist who was familiar with the disease that we were able to learn how to help our daughter.”

Mitochondrial disease affects each individual differently. Green said the disease deals with the muscles of a human body. It is caused by dysfunctional mitochondria that generate energy for the cell. Mitochondria are found in every cell of the human body except red blood cells.

One of the main effects for 11-year-old Ellie is her lack of verbal communication. Green said her daughter is determined to communicate with everyone. With modern technology Ellie is able to use an app on the iPad to communicate.

“We try to live as typical of a life as possible,” Green said. “We just approach everything a little differently – instead of doing 10 things in a weekend we may do one or two instead.”

Green said since the disease affects everyone differently they began to work with the Foundation for Mitochondrial Medicine.

The foundation works to raise funds for treatment. Founder Laura Stanley said the disease is linked to several different diseases such as autism, but there is no specific medication for mitochondrial disease.

To raise funds, the foundation hosts the Hope Flies Catch the Cure event. It started in 2010 and in its first year raised $220,000 through ticket sales, raffles and a live auction. This year the event is at the Mason Murer Art Gallery.

The symbol of the event and foundation is the firefly since the insect’s mitochondria makes it light up.

“Everyone knows a firefly and the energy that comes from the light it gives off,” Stanley said. “This was an easy way to explain the disease since everyone might not remember the lessons from their high school biology class.”

Each year the event has honorary chairs and this year’s is the Greens.

If you go:
When: Friday , from 7:30 p.m. to midnight
Where: Mason Murer Art Gallery, 199 Armour Drive, Atlanta
Cost: $150
Information: www.hopeflies.org
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