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Local girl is inspiration for 5K to help fight Rett Syndrome
5K amber-gant
Amber Gant, 13, of Richmond Hill. - photo by Erica Larsh

The Second Annual 5K Race and Fitness Walk, hosted by Energy Oasis of Richmond Hill, will be Saturday, April 19 and everyone in the community is invited to participate.

The Energy 5K committee selected the International Rett Syndrome Foundation to be the beneficiary of this year’s race and all proceeds will be donated directly to the foundation. The event will be followed by entertainment, local vendors, food and a silent auction.

The IRSF was selected with Richmond Hill resident Amber Gant, 13, as the inspiration and representative for this year’s 5K.

Gayla Sansoucie-Jones, a member and volunteer at Energy Oasis who is helping coordinate the 5K, said they are still looking for sponsors as well as donations, such as food or water and items for the silent auction. Jones said she encourages everyone in the community to come out in recognition of Gant, her family, and all those who suffer from Rett Syndrome.

"Energy Oasis is committed to enhancing the lives of all by improving physical health, increasing positive energy and creating an overall sense of balance and well being," Jones said. "Last year’s 5K had about 75 participants and we hope to at least double that number this year."

Gant attends Richmond Hill Middle School. In 2006 alone, she required more than five surgeries for the neurodevelopment disorder Rett Syndrome and will require full-time care for the rest of her life.

Jacklyn Gant, Amber’s mother, works at Energy Oasis and was just recently announced as the regional Georgia representative for the foundation.

"There are 40 families on the Rett Syndrome register in Georgia, but I’m sure there are more. The syndrome is still not widely known," Gant said. "When they’re little, doctors usually think it’s Cerebral Palsy, or Angelman Syndrome is another common misdiagnosis. A lot of parents just accept the diagnosis they get."

Gant said doctors misdiagnosed Amber with Angelman Syndrome when she was 2-years-old and later, when she was four-and-a-half, she was correctly diagnosed with Rett Syndrome. Gant hopes the 5K will help raise awareness in the community.

"(Amber) progressed normally and then in 30 days, everything just stopped," Gant said. "Awareness is a huge thing because there isn’t a lot of funding for Rett Syndrome. I want people in the community to become aware of this and hopefully think, ‘Hey, those are the symptoms my daughter has,’ and go back to the doctor and get checked for the possibility of it being Rett Syndrome."

Gant said while there is no cure for Rett Syndrome, there has been a lot of activity in the scientific community.

"They’re finding out so much," she said. "Rett Syndrome is in the autism spectrum, as the most severe form. Fragile X Syndrome is also part of that spectrum, and they found a cure for it in mice – which is unbelievable – we don’t find cures for things like this. But scientists really believe, in our lifetime, they will find something that can reverse a lot of the symptoms of Rett Syndrome."

Gant said Richmond Hill has been very good to her and her family.

At Christmas, a local contractor built a ramp at their home and purchased them a special needs jogger, which is a stroller for people with disabilities. Gant said she’s really excited about it, because the specialized stroller will allow her to run the race with Amber.

Entry forms are available at, or through an Energy Oasis official entry form. The 5K run will start at 9 a.m. and the fitness walk will take off at 9:05 a.m. Medals will be awarded to the top three in each age group. Entry fees are $35 and include an event t-shirt.

The course will start and end at Energy Oasis, going down Timberland Road and through the Richmond Hill Park.

For more information, call Energy Oasis at 756-5865 to speak with Gant, Jones, or Deidre Roy; email, or visit

Rett Syndrome is a unique neurodevelopment disorder that begins to show signs in infancy or early childhood. Every five hours, a girl is born with Rett Syndrome. It is almost always seen in females, but is also rarely found in males. It strikes all racial and ethnic groups and occurs worldwide in one of every 10,000 to 23,000 female births. Rett syndrome has most often been misdiagnosed as autism, cerebral palsy, or non-specific developmental delay. It is caused by mutations on the X chromosome.

The International Rett Syndrome Foundation, which was recently created in July 2007, is a nonprofit agency whose mission is to fund research for Rett Syndrome while enhancing the overall quality of life for those living with Rett Syndrome.

For more information, visit

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