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Raising awareness for a brother's burden

Friends raise awarness and funds for Spina Bifida

POSTED: April 16, 2013 1:00 a.m.

After Emma Grimsley’s youngest brother, John, was born with Spina Bifida, she and her best friend Anna Bussler decided to help other children like him by raising awareness about the birth defect.

Mary Grimsley, the children’s mother, said when John was born, she and her family knew very little about the diagnosis or what challenges John, now 2, may face because of it.

“That was the hardest thing at the very beginning when we found out that John was diagnosed with Spina Bifida,” Mary Grimsley said. “Just not knowing what it was. None of our friends had children with Spina Bifida, so we were really just educating ourselves a lot about it.”

Spina Bifida is a birth defect that varies in severity, but can cause orthopedic problems and muscle weakness making it difficult to move.

To help others and themselves learn more about the disease, Emma, 13, and Anna, 12, have spent the past two years raising awareness and educating their peers and neighbors through their organization, Rolling Hearts.

“When we found out that John was going to be born with it, we didn’t know what that meant and we were really worried and didn’t know what to think,” Emma said. “But now that he’s older, it’s not as bad as people would think. Some people would think when they meet people like John ‘Oh, I’m so sorry.’ But it’s not like one of those things we need to be sad about. We’re blessed to have John. So it’s not as bad as everyone thinks it would be.”

The girls got the idea to start the organization after reading about other girls who were helping people in the “American Girl” magazine.

“The ‘American Girl’ magazine was definitely our start,” Anna said. “We wanted to do some sort of a charity, but we thought we should do something that there isn’t very many charities for. Like cancer had a lot of charities and stuff, so we thought we could make a charity for Spina Bifida.”

Don Grimsley remembers coming home from work to find the girls had set up an office for the organization in the unfinished basement.

“(T)hey had developed a business plan,” Don Grimsley said. “They had a three-ring binder, they set up an office in the basement ... with desks and chairs and created this whole thing.”

Anna said since starting the charity, she and Emma, along with their siblings, have become more compassionate toward others. Now, she said she knows “it’s a blessing” to be close to people with special needs.

Amy Bussler, Anna’s mother, said it’s been wonderful to watch the girls grow and learn through their work.

“I think in our society, when we’re so focused on personal gain and materialism that any opportunity for kids to do something that’s just for other people is just beautiful,” Amy Bussler said. “I love seeing them so excited about this.”

With a little help from their parents, the girls created a logo. It is a circle of children holding hands with a heart in the center to symbolize the wheel of a wheelchair. They duo also established a website, rolling
hearts.org.

The girls have raised money and awareness by selling T-shirts and bracelets. The pair also had some fundraising success with a neighborhood lemonade stand.

Since starting the charity, the girls have donated more than $1,300 to various organizations such as the Spina Bifida Association of Georgia, the neuroscience division at Children’s Healthcare of Atlanta, and Camp Krazy Legs, a camp for children with Spina Bifida and other special needs. They have raised almost $2,500 total and are in the process of researching to find the next organization to donate their raised funds.

Emma said her favorite part about running the organization is donating money to help people with the disease.

“We’re going to do more fundraisers in the future, like a bake sale, a peanut stand and just other things like that,” she said.

Emma said she and Anna hope to donate more money to the summer camp and eventually get jobs as camp counselors there.

Mary Grimsley said the best thing about the girls starting the charity has been the education they have provided to friends and neighbors.

“The most important thing is that the kids know that John is just a kid,” Mary Grimsley said. “He wants to have fun. And they want to make sure that other kids that are like John get to have the same experiences.”


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