It is a race for love, a race for life.

It is a race born in the love for four year-old Riley Peek. It is a race determined to enhance awareness and participation and to raise needed research funds for the Mitochondrial disease that affects this precious little girl and so many other children. Now in its second year, the Race for Riley fundraising event will be held April 29 at Georgia Baptist Children’s Home in Palmetto.

Riley’s diagnosis was confirmed when she was two years old. Her mother Waynette said the inspiration to organize the fundraiser last year came after she and her husband Rodney attended a symposium on Mitochondrial disease. One of the topics was on fundraising.

“I thought, living in Palmetto, it’s such an amazing community, an amazing family, they’ll do anything for anyone,” Waynette said. “So with Mitochondrial being so new and unknown, I thought I’d try to do a Run/Walk fundraiser to increase awareness and raise money for research, thinking that would be an easy thing to do. Little did I know how difficult it would be.”

The initial idea of having a small, community event snowballed into a much larger event, Waynette explained. Her determined efforts took a stay-at-home Mom to areas all over Atlanta to ask individuals and businesses to participate by funding sponsorships in the event. Waynette’s efforts paid off in 2005, with more than 1,200 runners registering for the event, and paved the way for the 2006 Race for Riley next month.

The event will be as much a family fun day as a 5K Walk/Run. Along with the sponsored feature event April 29 will be activities such as a 1 Mile Run and Tot Trot, a live auction, live music, pony rides, a host of activities for kids of all ages and food provided by Varsity Restaurant. The 5K Run/Walk will begin at 8:30 a.m., followed by the 1 Mile run at 9:15 and the Tot Trot at 9:30. The many other events will flow into the remainder of the day.

A major sponsor of the event is the Delta Pilots Charitable Foundation, set to contribute $15,000 to the event. Sponsorship of walkers and runners can come in any amount, Waynette said, though many are ranging from the hundreds and into the thousands of dollars. Any level of contribution, she stressed, is very welcome.

The event site, Georgia Baptist Children’s Home in Palmetto, is located at 9250 Hutcheson Ferry Road. The entry fee for walking and running events is $15 if pre-registered and $20 after April 21. Event registration and other information can be obtained by visiting www.raceforriley.org or by contacting Waynette Peek at (770) 463-0714 or by email at waynette@raceforriley.org.

All proceeds collected at the event go to United Mitochondrial Disease Foundation, where 90 percent of all funds collected last year were dedicated to research.

A mother’s reflection

Sitting with her Mom and playing happily at the Blue Eyed Daisy last week, Riley’s magnetism and fascination with life were unmistakable. So was the smile on her face and in her eyes, one that held clear evidence of just how precious life is. Full of curiosity and a full spirit, Riley struggles with not being able to talk, with muscle failure and delayed development, with abnormal brain function and gastrointestinal problems. The light in her bright eyes also made clear the need for increased research into a disease that robs so many children of their young lives.

“When you’re going to have a child, like this little girl, you naturally plan the future in your mind,” Waynette said softly, reflecting on family, on Riley, six year-old Reese and four month-old Graham. Waynette is like so many parents who face the challenges of having a child with significant physical or cognitive issues. Waynette is stronger than she knows. “You plan what her life and your life will be like. Getting married and having that little girl, having your kids grow, having that empty nest where it’s just you and your husband. It’s like the American dream, the perfect family. And we had that. Rodney and I, our son Reese who is very healthy. He was right at a year and we found out we were pregnant again. That was perfect for us. And you have your second child, and it’s there in the delivery room where everything comes tumbling down within a second. You see the doctors faces change because her color is not good. She was blue. Rodney had to leave the delivery room because he thought she was not alive. And so that day, literally within seconds, changed our entire life.”

“And when Riley was diagnosed at age two we began to find out all this information about Mitochondrial. It was heartbreaking. You try to understand the disease, which is a very complicated disease. You go to doctors and you leave with more questions than you went with. And hearing some of the answers from the doctors, some of your hopes and dreams are shattered because you dreamed of having a healthy child who will grow up, a little girl, who will grow up and play sports or cheerleading or go on dates and go to the prom with her hair all done up.”

Waynette and Rodney were not alone in their initial lack of knowledge of this mysterious disease. It’s range of deleterious effects are staggering, having their origin deep inside the body’s individual cells. Mitochondria are specialized compartments present inside every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90 percent of the energy required to support growth and sustain life. Mitochondrial diseases usually affects children and result when these vital components fail. When this happens, less and less energy is generated within the cell, resulting in the injury or death of the cell. When repeated throughout the body whole systems can fail, severely compromising health and life. The diseases of these tiny cell components are far reaching and appear to cause the most damage to the cells of the brain, heart, liver, kidneys, skeletal muscles and the endocrine and respiratory systems. Also wide ranging are the symptoms. Depending which cells are affected, those symptoms can include gastrointestinal disorders, seizures, liver disease, developmental delays, hearing and vision problems, muscle and respiratory problems, poor growth, diabetes, cardiac disease and susceptibility to infection. And because an accurate diagnosis is so difficult, the true numbers of those affected with the various Mitochondrial diseases is hard to pin down. Numbers range, said Waynette, from one child in 2,000 to one in 4,000.

The things that matter most

Everyone knows, at least intellectually, what things are most important in life. Yet there are situations and circumstances that occur unexpectedly that completely alter expectations and outlooks. Those new realities have a way of changing people, sometimes for the better.

“None of us are guaranteed a tomorrow. But I think knowing that a child has a short life, you make things more special. You cherish things more. And you don’t know it until you don’t have it. You don’t realize what you’re missing until it’s not there, the little steps that a child makes in her development. Everything she does now, we get excited,” Waynette said, the resolve in her own bright eyes overshadowing the sadness in her heart and the reality of the likelihood of her daughter’s limited time. “We just enjoy life together as a family. And having Riley has totally changed our whole family’s life. Because you realize what’s important. Having a nice car, having a nice house, that’s not important. The important thing for your family is their health and being together. So as a family this has brought us a lot closer, to enjoy life and slow down in a world that is so fast-paced. We all know what the most important things in life are. The question is, whether we choose to live them. I used to know, but now I’m practicing it, too.”

“But, you know, you can look at that situation and go, ‘Oh poor me,’ and live very depressed. And it’s your choice on how you’re going to deal with this. So we choose not to be like that, although you can’t help but have those thoughts again about not having your daughter growing up and everything. And you try to keep yourself up, but you can’t always be up. Our life now is a rollercoaster, our entire family. And Riley determines it. If we are all doing well and happy, then she is. If she’s not doing well you can see our whole family turn and be sad and depressed because when she gets sick it’s not like me and you getting sick. We end up in the hospital a couple of times every year. And every time you go there you wonder if you’re going to make it out. And it can be anything from a stomach virus to a bad cold. I don’t want to live in a bubble because I want our family to be as normal as possible with Riley. We do go out and try to be as normal as possible for their sake. Our son Reese knows there is something wrong with her, but he takes care of her. He doesn’t realize this is a long-term thing. One time we went to the doctor and he asked, ‘Mommy, when you come back will Riley be able to talk?’”

Though there is a wide range in life span due to the many variables, most of those with Mitochondrial disease do not survive past late childhood or early adulthood. And because the effects are so individual, each case is different in its manifestation but not in its outcome. Within that crushing uncertainty lies all the more reason to make very day count.

“You can’t look at another child with Mitochondrial who’s doing really well and say that’s how Riley’s going to be because then you can turn around and see another child who is in a wheelchair with a feeding tube and think that’s what she’s going to be like,” Waynette said. “A lot of times these children make progress and reach a plateau and then some time later they start regressing. That’s when all your fears come out and you think, is this it? And you never know when it’s going to happen. And that regression leads to the end.”

Lessons from love

The Race for Riley is an attempt to bring a heightened awareness to this disease that robs children of their future. And with Mitochondrial disease there comes so many varied forms of disability. In societies around the world, disability and those carrying that label, easily become the objects of misunderstanding, suspicion or fear. Yet beyond what the eyes can see or the ears can hear lies a greater reality, one that suggests that, with a loving, open mind, anyone can forego the idea of labeling the disabled and opt, instead, to disable the label. The willingness to engage that perspective is a lesson from love.

“When I tell someone Riley has Mitochondrial disease they don’t have a clue. I even have to explain it to some of the doctors she’s seen. So I guess we just want people to know what the disease is and how it affects children,” Waynette explained with hopefulness. “And you don’t want people to be scared of a child with a particular disease. You want them to treat them like they would anyone else. I think that’s one thing Riley has taught us, when you see a child with a visible disability, to talk to them. It’ll make them feel so special just to know you’re not scared to go up and talk to them. And that’s what I want for Riley. I want people to talk to her and love her and treat her like any other little kid.”

People often participate in fundraising events supporting causes, concerns or diseases that directly affect their lives or those of a family member. After all, blood is thicker than water, they say. But with the much more rare Mitochondrial diseases there simply are not as many to identify, not as many to provide needed funding for research. But perhaps there is more to the story, because people sometime participate and help fund little known causes when something touches them. That something is love. While it is true that blood is thicker than water, it is a greater truth that love is thicker than blood. And the Race for Riley is a race against time, a race for love.