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The Roanoke Times (Virginia)


One phone call changed the Garner family's shopping list from a pink baby stroller to an electric wheelchair.

Eight years ago, mobility aids — much less mobility issues — were foreign concepts to James and Jennifer Garner. Today, the Garners are spearheading the construction of an all-access playground in Daleville for kids with and without disabilities.

When Addy Grace Garner was 4 months old, her parents were told that she only had two years to live.

The news came out of nowhere to the Garners, who live in Botetourt County. They'd had a perfect pregnancy, and Addy seemed to be a happy, healthy baby.

But the little girl had missed several important milestones at her four-month check-up. She couldn't hold up her head or sit up without help. Her doctor referred her to a neurologist to see what was going on.

The neurologist told her parents to relax.

"He told us he did not think it was the worst-case scenario," Jennifer Garner said.

But then the Garners got the call from his office: Addy had type 1 spinal muscular atrophy, or SMA, a rare disease that made her muscles very weak and would cause them to deteriorate over time. It was the worst-case scenario after all.

Most children with SMA don't live past the age of 2 because of breathing problems. The disease affects one in every 6,000 to 10,000 babies in America, according to the Addy Grace Foundation, a nonprofit the Garners founded six years ago. It doesn't interfere with cognitive brain function, just the loss of nerve cells in the spinal cord, causing a lack of muscle stimulation and muscle deterioration over time.

"It smacked us in the face because he had led us to believe that was not it," Jennifer Garner said.

At a follow-up appointment, the Garners were advised to take their daughter home and just love her until her time was up. The neurologist said there was nothing they could do.

The Garners didn't see that as an option.

They took Addy to a specialist at Johns Hopkins Hospital in Baltimore. He didn't give them everything they were hoping for, either, but he did give them something: an SMA clinical trial in which to enroll Addy. It was the spark of hope they needed to keep searching.

Then the Garners heard about a conference in Cincinnati that offered advice to parents with kids with SMA. There, they met the doctor who would give them the one thing they'd been longing for since Addy's diagnosis: options.

Although this specialist was in Wisconsin, Addy's parents said their visits were well worth the commute. The doctor offered several immediate treatment approaches, and they chose the least invasive one. Addy was set up with a BiPAP breathing machine, a cough assist and a suction machine. She also had surgery to insert a feeding tube in her belly.

Today, 8-year-old Addy is very strong, her mother said. She needs help breathing and moving her body, and she cannot speak, but she has her own way of communicating. Addy's parents will hold up her arm, and Addy will nod with her wrist to say "yes," and she can blink to answer directed questions.

The Garners said Addy is a miracle; God came through with options, and that's all they could ask for. They are grateful for every day he grants them with their daughter.

"She is here today because of him," Jennifer Garner said.

When it comes to day-to-day living, things can get tricky. The Garners can't take Addy to do whatever they want, whenever they want. Sometimes it's too hot or wet outside for her or her necessary equipment, and sometimes places don't have the resources they need for their daughter to be able to participate.

But that didn't stop them from taking Addy to see the ocean, something they'd dreamed for her since she was born.

Two years ago, the family drove to Virginia Beach. Garner said watching her daughter watch the waves curl, foam and roll, and seeing the joy on her face, was the greatest moment.

After sitting in the sand for a while, the family went for a stroll, and when they reached the end of a boardwalk, they saw a playground. But not just any playground. It was an all-access one, with wide ramps and accessories with extra support, such as swings with backs.

"Our hearts melted more than hers did," Garner said. "This is something she can actually do."

It gave them the idea to build a similar playground near their house.

At first, the project seemed unrealistic. The Garners needed to raise $750,000. With the help of organizations including Foundation for Roanoke Valley and several Virginia companies, the Garners said they are more than 40 percent of the way to their fundraising goal.

Stephanie Sparks, principal of Sparks@Play, a playground equipment supplier, said the playground will have double-wide ramps, so two wheelchairs can roll side by side; a sturdy zip-line with modified seats and straps for kids who need back support; and a rocking boat that can carry wheelchairs. There also will be features like sensory and sound interactive play boards.

The playground will be built adjacent to the YMCA that 's under construction in Daleville, on land provided by the Y, which is slated to open in spring 2019. It's a prime location with a 360-degree mountain view. It will take only 30 days to build the play area, but the YMCA has to be built first, and the funding has to be collected.

The Garners started the Addy Grace Foundation to provide information and monetary support to families with kids with SMA. There's a contact portal on the nonprofit's website,, so families can contact them. The website also features a layout of what the playground will look like.

Addy is now in third grade at Greenfield Elementary, where she Skypes into the classroom three times a week, using blinking to communicate. She likes going outside, playing games with her family and watching movies like "Frozen" and "Cinderella" while playing on her swing with her 3-year-old brother, Bryson.

"She knows she's different from her peers here," her mother said. "But that doesn't stop her from living her life. She loves her friends, family, arts and crafts, and just being a little girl. She's so happy - she knows no different."

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July 8, 2017


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