Atley's story - Part four. Atley today and giving back.

For those of you who know Atley today, he is a happy and active 9 year old boy. His feeding tube was removed two years ago and he has been holding his own with food. Around the same time, his strength and stamina surged allowing him to give up his wheelchair. He takes ballet lessons twice a week and dances in as many ballets as he can. He will never play contact sports or be a fast runner, but he makes up for his low muscle tone with incredible muscle strength.

Atley, 9 years old.

Unlike some congenital heart defects, Atley's defects can not be cured or repaired. His surgeries are merely palliative, meaning they extend the function of his heart, but in no way "fix" his condition. However, if Atley had been born even 10 years earlier, he would have died in the hospital without chance of any surgeries to extend his life. There are very few, if any, adult survivors of his condition. So, what does this mean? More research is constantly needed to keep Atley, and others with congenital heart defects, alive to reach adulthood.

Because Atley will need heart surgeries, experimental treatment, and treatments that haven't even been invented yet, we have spent a great deal of our time raising money for congenital heart defects reserach and bringing heart defects awareness to the general public. The other, larger, goal of our charity work was to bring comfort and understand to new parents of children born with heart defects. Heart defects are not part of newborn screening and are often missed on ultrasounds, yet they are the most common birth defect. When Atley was born, there was no support group for heart parents, no network of others to connect with, and very little information about Atley's defects.

My good friend, Valerie, and I decided to create a foundation to help new parents of heart children by offering support groups, fun family activities, care packages for hospitalized children and their families, and fundrasing for heart defects research. Valerie's son, Noah, lost his battle with congenital heart defects just before his second birthday. We underestimated the impact we would have on the Kansas City area through our efforts, and throughout the world, with our congenital heart defects awareness products. Please visit our foundation site to learn more about our Kansas and Missouri efforts to help heart families.

Valerie Janke Rexin and Julie Thomas Bowles co-founders of the Congenital Heart Defects Families Assn., a 501(c)(3) not-for-profit, at the AHA Heart Walk 2004

Since 2002, our Kansas City Heart Walk team has raised well over $100,000 for the American Heart Association's continued research of congenital heart defects and their cure. Last year, we raised close to $50,000!

Jonah Rexin Iost his brother Noah to congenital heart defects) and Atley, Heart Walk 2008

The AHA Heart Walk is a family affair! Julie's entire family was in from England and Colorado.

In 2005, Atley had the honor of being the AHA Heart Child. Atley, Parker and I spoke at many events to raise congenital heart defects awareness and research money for the American Heart Association. The job was demanding, but so exciting and rewarding. Atley designed the AHA holiday cards for 2004, was featured in a newspaper article, was on Fox News and spoke on the radio. Of course, mom did most of the talking, but Atley stole the show.

Atley and Mom speak on Fox News.

Atley speaks on stage at the Heart Walk with Congressman Dennis Moore (D) - Kansas

After his 2005 success at AHA Heart Walk child, Atley continued to raise awareness and funding for congenital heart defects through many personal appearances at AHA events. He was one of the few boys I know who always owns a tux!