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On Sept 22, 1966, my parents expected to receive a healthy baby. And at 10 lbs., I appeared to be just that. However, by 18 months of age I was suffering from severe malnutrition and numerous pulmonary infections. Expectations for my life changed when at 18 months of age, I was diagnosed with Cystic Fibrosis. My parents were told to expect precious little time with their curly, red headed son. But God met each expectation of my life ending or being limited with more life and life more abundant than we could ever imagine.
Thus began a journey for our family. With an overall life expectancy of 6 for the average CF patient at that time, and 2 yrs. for me, my parents struggle to keep me alive was paralleled by the efforts of doctors and researchers. As my mother faced what she later said was one of her most difficult challenges of coercing a very weak little boy to master walking and crawling up the steps, researchers struggled to find treatments that would at the very least make life more comfortable for children with CF and hopefully would prolong their lives.
Surviving long enough to make it to the next advance in CF research became a theme in my life. Even though my life was expected to be short, my parents had a determination to give my life as much normalcy as possible. At times, it seemed they pushed me harder than they would have had I not had CF. They encouraged me to compete in swimming and tennis. Missed practices were not an option unless I was really sick. I thank God for giving me a mom and dad who drove me to have the spirit of a survivor and not a victim. This is one of the reasons that my life became a series of unexpected accomplishments, milestones and joys facing off against the expected outcomes of a life encumbered by CF.
In the 70's, the life expectancy doubled from 6 to 12. During this time, my health seemed to improve although I was still very thin and experienced chronic, excruciating stomach pain. At this time, CF research began to more effectively address the respiratory aspect of the disease with improved breathing treatments and very aggressive IV antibiotic treatments.
God taught me a lot about fear.
2 Timothy 1:7 "For God did not give us a spirit of fear, but of power, love, and self-control."
Isa 41:10 "Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand."
There were lots of things to fear with CF. God made it clear that He was with me during these difficult years. He asked me not to be afraid, but to trust in His plan and experience His peace.
However, I was about to head into the most difficult period yet. Respiratory infections racked my body, which coincided with the onset of puberty. The normalcy my parents strived to maintain in my life was thwarted by the need to keep me out of environments where I would be exposed to viruses or bacteria. A common cold for a healthy person could result in a life threatening infection for me. At this time, I was told to avoid movie theaters, shopping malls and eventually I was even removed from high school.
My teenage years were characterized by long stays at Duke University Medical Center where I received intensive and specialized treatment of CF. Even though the life expectancy was rising and eventually hit the 20's, my life expectancy was estimated at 15–16 years of age. At a crossroads in my life with CF, struggling to defy the expected with the unexpected, my relationship with God blossomed. I had a peace about my life and a lack of despondency in the face of eminent death.
II Corinthians 12:7 - "To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
Removed from high school, I was home schooled while I pursued a GED. During this time, my dad brought home the Radio Shack TRS-80 Model III computer. Out of my hobby of tinkering with this computer came the basis for my career, information technology. A self–taught software developer, I began my career at the tender age of 14 and began working full–time by age 15. A short, skinny, red headed kid, I once found my self in the midst of a bunch of 30 and 40 year olds at a computer software convention. I wasn't even old enough to have a license. This oddity is yet another example of the unexpected squaring off against the expected.
Just as I rounded the corner from this most difficult time in my battle with CF, research began to explode. In 1989, Foundation supported scientists discovered the genetic defect which causes CF. This discovery led to many new developments and clinical trials. Pulmozyme was introduced, which was one of the first CF specific drugs, along with antibiotics by aerosol and improved pancreatic enzymes.
Just as the research exploded, so did my life explode with a series of the most unexpected accomplishments and milestones. In 1988, I met a girl who was not afraid of loving someone who probably would not have a normal life expectancy and who faced daily health struggles. We were married in 1990. That same year, the boy who did not benefit from going to high school graduated from the University of TN with high honors in Business Management/Information Systems. Upon graduation, I co-founded a computer software company called Infinite Software Solutions. As if all of this wasn't enough, God kept the abundant life of which I spoke earlier coming and coming.
When we married, Lydia and I both understood that we could not have children because of a congenital defect that occurs in 95% of men with CF. However, we found out about 5 years later, that a male fertility specialist was performing procedures in Belgium that would allow men with CF to procreate. I was one of the first men with CF in the US to benefit from this procedure. In 1997, I had defied so many odds, so many deadlines for death, and was about to experience perhaps the most joyful and most unexpected of all the events of my life – my daughter Ansley was born. The fertility procedure for men with CF in combination with in vitro-fertilization has made possible the birth of both of our daughters, Ansley (11) and Grayce (8).
Soon after Ansley was born, we sold a division of my company to a start-up called Medcast. As the Chief Technical Officer of Medcast, I was involved in the development of this business for 3 yrs until it was acquired by WebMD in 2000. After the sale and integration of Medcast into WebMD, I joined a venture capital firm, which originally invested in WebMD, where I focused on investments in early stage technology companies. What started with a Radio Shack TRS-80 Model III computer and a homebound kid with CF has progressed into something no one would have expected.
While these amazing events were occurring in my life, CF researchers were busy correcting the defect within the gene that causes CF in the laboratory. One hundred and eighty individuals with CF in the US underwent their first experimental gene therapy treatment. In addition, the overall life expectancy increased to the 30's during this time.
In January of 2002, I found my health declining. Having resisted CF's claim on my life for 8 weeks at home and at work, I finally entered the hospital with very low pulmonary functions and low oxygen saturation. God chose to continue to heal me through medications and a stubborn will to fight.
I have periodic infections, including a hospitalization in March of this year. I am followed on a monthly basis at Emory.
After Fuqua, I joined a communication technology firm as their Chief Technology Officer where I am today.
God has taught me to focus on excellence in everything I do. Not to use CF as an excuse, but to use CF to teach others about Christ and to demonstrate His power.
Many would look at my life and see me as a victim of a hideous disease. However, by God’s grace my life is a life full of unexpected blessings and miracles. Each day is a celebration of the life that God has given me. Each breath is a small victory. Only God could paint this amazing picture.
At every turn, I have met with abundantly more than I could ever expect or imagine. I am not here because I am a great person. Rather I am here because, God has been gracious to me and God has given me a will to LIVE. He has allowed research and advances to extend my life. Most importantly, He has used CF to make me see my need for Him and His son, Jesus Christ.