Three-year-old Addison Marlow shares a grin in this special photo. Addison has a rare disorder called Phelan-McDermid Syndrome that affects memory. A benefit poker ride will be held Saturday to raise money for research that could one day lead to a cure.
LOGANVILLE -- Addison Marlow has a condition so rare, it was only first discovered about 15 years ago. Addison, age 3, is one of only five Georgia residents to have Phelan-McDermid Syndrome; there are only 800 known cases worldwide.
That's why it's so important money is raised and awareness is brought to the condition, a genetic occurrence that is the result of a damaged or missing protein on the 22nd chromosome, called the Shank 3 gene. The gene is linked to autism, Alzheimer's and Parkinson's diseases.
It helps retain memory, and in Addison's case, because she is missing the gene, she has forgotten how to do skills she once learned, like talking and pointing to her belly button, nose and eyes.
"Being able to communicate with your child is priceless. You don't know when she's hurting, what she wants, you don't know what makes her happy all the time," said her mother, Melissa Marlow.
Also, Addison often doesn't verbalize her pain like other children might, so she could be hurting before she reacts to it, her mother said.
It's hard to know what Addison's future will be like, because testing has just begun and there aren't many adults to look at to predict how Addison will be when she grows up.
Melissa and her husband Joey grew up in Rockdale and attended Rockdale High School. The couple now lives in Loganville, and this Saturday, they are hosting a fundraiser for the Phelan-McDermid Syndrome Foundation, a non-profit organization that offers support for families affected by the condition and raises awareness and money for research.
Researchers at Duke University have been successful in removing the protein in mice; the hope is that they can now figure out how to put it back. If they can, it could help people all over the world with conditions like autism and Alzheimer's.
The Marlows hope to do their part to raise funds for more research and hopefully a cure. A motorcycle poker ride will take place Saturday at Corn Dawgs at 955 Leone Ave. in Loganville. Registration begins at 8:30 a.m. and the ride begins at 10 a.m. and will ramble through the countryside, including Camp Twin Lakes, and riders will pick up a poker card at each stop along the way. The winning hand gets $500 upon returning to Corn Dawgs. The ride is $30 for one rider and $45 for a rider with a passenger.
Corn Dawgs will be open from noon to 3 p.m. for the general public, with an admission cost of $10 per child and $15 per adult. Admission covers entertainment, a petting zoo and various other activities. All proceeds, including food sales, will benefit the Phelan-McDermid Syndrome Foundation.
For more information visit www.addisangels.org