I normally am not a big football fan. In the past, Super Bowl Sunday was more a day to enjoy buffalo wings and watch entertaining TV commercials. But this Sunday I will actually be watching the game in support of Charles Tillman, a Carolina Panthers cornerback who brings his "A-game" to everything he does on and off the field.
Charles and I have a few things in common. We both are busy parents raising four kids, and our lives have been altered by cardiomyopathy. Our journey with this devastating heart disease is why we have a shared passion for helping children with cardiomyopathy.
On May 17, 2008, as Charles and his family were preparing to head back to Chicago for season training, his second youngest daughter, Tiana, came down with what was thought to be a standard cold. Three days later to everyone's surprise, Tiana was in heart failure and airlifted to Children's Memorial Hospital.
Charles and his wife, Jackie, soon learned that their baby daughter had dilated cardiomyopathy, a disease that affects the ability of the heart to pump blood through the body. Doctors told them she would need a new heart to survive. The news was hard to accept, but they knew they had no alternative. In the weeks that followed, Tiana's health deteriorated quickly. She battled infections, was intubated, and then was placed on the Berlin Heart -- a ventricular assist device that takes over the heart's pumping action --prolonging her life while she waited for a new heart.
Unfortunately there is no cure for cardiomyopathy, and it is the leading cause of heart transplants in children. While waiting for Tiana's new heart, Charles said the toughest thing to deal with was knowing that in order for his daughter to live, another child had to die. This is a painful reality that all transplant families are confronted with. It was a scenario that I found myself in when my young son was in critical condition and waiting desperately for a donor heart.
On July 31, after 97 days in the hospital, Tiana was discharged with a new heart. She currently is doing well, but the Tillmans still deal with countless visits to the cardiologist and endless doses of medication. The experience has made them a stronger family in love and faith, and dedicated to giving back.
Charles has said that everyone has the responsibility to lend a helping hand. He and his family have been great supporters of the Children's Cardiomyopathy Foundation, a non-profit that I founded after losing two young children to cardiomyopathy. As a sports figure, he has used his recognition to call attention to a heart disease that often gets overlooked. I admire Charles for sharing his personal story, as difficult as it is, to educate the public about cardiomyopathy and the importance of organ donation. He also testified in front of Congress in 2009 to support the FDA approval of the Berlin Heart.
I was fortunate to meet Charles and Jackie in 2008 through the Children's Cardiomyopathy Foundation (CCF), and he has been generous with his time and money supporting our cause. Over the years, The Charles Tillman Cornerstone Foundation has contributed to CCF's research grant program and funded CCF's Ensuring a Good Learning Environment - A Cardiomyopathy School Resource Kit. The kit informs school staff about the disease and guides parents on working with their child's school to obtain the appropriate accommodations and modifications. Charles even took time out of his NFL spring training to participate in our #mycampAED Scavenger Hunt to highlight the urgency of using an automatic external defibrillator (AED) during a sudden cardiac arrest.
It takes a team to defeat cardiomyopathy, and we are thankful to have such a star player on our team. I will be rooting for the Carolina Panthers this Sunday, and I hope Charles gets the Super Bowl ring he deserves after playing pro football for 12 years. In honor of National Heart Month, I salute Charles Tillman for all that he does to raise awareness of pediatric cardiomyopathy. He is a heart hero to me and to countless other families battling this chronic and life-threatening heart disease.