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Published Friday, April 18, 2008 in Local

Special

The Race for Riley, named for six-year-old Riley Peek, will be held Saturday, April 26 in Palmetto on the grounds of Georgia Baptist Children’s Home. Riley has mitochondrial disease. This year’s event raises money for the Joseph Sams School in Fayetteville.

Coweta joins Race for Riley to aid school

By Amy Riley

The Times-Herald

The fourth annual Race for Riley on April 26 will benefit the Joseph Sams School in Fayetteville, and Cowetans are getting on board with the fundraiser.

The event will be held at the Georgia Baptist Children's Home in Palmetto. Registration opens at 7:30 a.m. and the first race begins at 8:30.

The annual race is held in honor of Riley Peek, the 6-year-old daughter of Rodney and Waynette Peek of the city of Chattahoochee Hills in South Fulton County. Riley, a student at the Joseph Sams School, suffers from mitochondrial disease, a genetic disorder that results in a spectrum of disabilities.

The annual fundraiser, organized by Riley's mother, Waynette, has become a community-wide event -- bringing together runners and walkers of all ages, as well as sponsors and volunteers from all over the south metro Atlanta area.

Mitochondria convert the energy of food molecules into the ATP that powers most cell functions. Mitochondrial diseases take on unique characteristics due to complex inheritance patterns and due to the important role that mitochondria play in a large array of cellular functions. Mitochondria are the powerhouse cells that produce energy.

The way the disease presents itself is different for every child, typically affecting the organs that require the most energy. Many sufferers experience problems with hearing, vision, and heart function. Riley is strong in those areas; her disease manifests itself most in her brain.

"Riley's brain is starved for energy," her mother said. Her brain and nerves don't communicate well.

"She has an extremely high pain tolerance because she doesn't perceive pain like most of us do," said her father, which makes her particularly vulnerable to injury.

While the parents of many children with mitochondrial disease have to struggle to get their children to eat -- many have to have feeding tubes -- the Peeks have to carefully monitor and manage Riley's food intake because she does not have the capacity to feel full. Riley consumes a very healthy diet of lean proteins, fruits and vegetables.

Riley is developmentally delayed and also suffers from a few gastrointestinal issues. But the biggest challenge, according to her parents, is the fact she is non-verbal. "That's what we are working on the most right now," said Waynette.

Riley, as well as the rest of the family, including her 8-year-old brother Reese and her 2-year-old brother, Graham, signs to communicate. "Graham is actually better at it than the rest of us," said Rodney.

The proceeds of the first two Race for Riley fundraisers went to the United Mitochondrial Disease Foundation. But when Riley began attending the Joseph Sams School, her parents reevaluated and decided to donate the money raised to the institution that had, by far, the greatest impact on Riley's daily life.

At the Sams School, Riley receives physical therapy, occupational therapy, speech therapy, and works on social and life skills development.

Riley's parents augment the gains she is making at school by working with her constantly at home.

"The Race for Riley is just one of a number of large fundraisers that benefit the school, but this one is extra special because it allows people of all ages and all abilities to participate," said Waynette.

Cognitively, Riley is doing well. She is learning to dress herself and learning colors and shapes. She absorbs nearly everything around her; she just can't communicate verbally.

"We feel so confident and secure when Riley is at school," said Rodney, and that is absolutely critical because things can turn very quickly for her. Common illnesses that may take days to warrant a trip to the doctor for other children can evolve within a period of an hour or two for Riley, and she can go from sick to critical in a matter of minutes.

"When we were diagnosed," a process that took over a year, "we were told there is no cure," said Rodney. "Your whole life changes at that moment."

The typical life expectancy for children with mitochondrial diseases is late childhood to early adulthood. "Every day you wake up, and you have a choice," he said. "You can allow yourself to be overwhelmed by the situation, or you can see every day as a blessing. This has really brought our family together, and Waynette and I together, in ways it's hard to describe."

"I remember when we were trying to teach Riley how to transfer an object from one hand to the other," he said. "We had been working on it for a while, and when she finally did it, we were so thrilled."

"Riley is in a really good place right now. She's learning, she's loving and affectionate, and she's happy, and we are so thankful for each day with her," said Waynette.

"She's very attuned to me," she added. "If my mood changes, her mood changes. If I have to get on to her brothers, she is affected by it, and I have to reassure her that everything is still OK."

"The race is therapeutic for Waynette," added Rodney. Waynette agreed.

"You want so much to be able to do something to help, something to make a difference, and this allows me to do that," she said.

The fourth in a series of Race for Riley Benefit Nights will be held at Sprayberry's Barbecue on Bullsboro Drive from 5-8 on Monday. Ten percent of the proceeds will benefit the race, which, of course, benefits the Joseph Sams School.

The Chick-fil-A restaurants in Thomas Crossroads and in Fairburn already held benefit nights, as did Oz Pizza in Fairburn. All four restaurants have registration forms for the April 26 race.

To find out more about Riley, the race, and registration, go to www.raceforriley.org. Runners/walkers can also register on the day of the event, beginning at 7:30 a.m., but everyone who pre-registers is guaranteed a T-shirt and a race bag.

"We will have extra T-shirts and bags for those who register the day of, too," said Waynette, but we can't guarantee the goodies like we can for those who pre-register."

Through donors and sponsors, this year's race has already raised more than $35,000 for the Joseph Sams School.

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