A few years ago, a friend of mine, Shane Billingsley, told me a story which gave me good perspective on life dealing with his son and his disease. Shane was the head coach at South Decatur when we won a sectional in the mid 00's. He spoke to me, a JV coach, with the respect that few head coaches would and that was something I never forgot. We both share the same passions for basketball, our families, and Christ. Shane is a good man, below are excerpts from his blog and the story of his son Ayden.
"As we were sitting in the doctor’s office of the famed Cleveland Clinic many thoughts were racing through mine and Becky’s minds. Answers had eluded us for more than 18 months. This all began with a regular check up when our little boy Ayden turned 9 months old. His pediatrician noticed that he had not gained weight since his 6 month check up. This was a red flag and set us on a journey that would change our lives. We would first see a GI specialist and eventually he would be seen by 10 different doctors. We learned his body was not producing pancreatic enzymes, that he had some structural issues with his lungs and other organs in his body. The doctors told us that he was carnitine deficient and his body was not producing enough energy to create adequate growth. We found out all these things but not one doctor could tell us why. He would be tested, x rayed, cat scanned, poked, and prodded still nothing conclusive. That led us to the Cleveland Clinic. It is believed when dealing with 3 or more body systems that have issues, a Mitochondrial Disease is suspected. Dr Parikh at the Cleveland Clinic is one of the best in the US and it took 6 months to get an appointment. For months we prayed for answers and as we made the trip to Cleveland, Becky and I were excited and optimistic about knowing what was going on inside of Ayden’s body.
Our world was turned upside down when Dr Parikh spoke the following, ”Ayden has DNA Depletion Syndrome and the prognosis is that he will not live much longer.” Shock, disbelief, anger all were flowing through my body and the only thing that I could think of is why is our baby going to die? Neither Becky nor I remember much of the visit or exactly what the doctor was telling us. Over and over in my head I kept hearing him say,”enjoy every moment with him because he will only get worse from this point on." We hid emotions when the phone rang and Courtney our 14 year old daughter called as school had gotten out and she was excited to know what we found out about her baby brother. We were able to muster up the courage to hide our emotions and tell her it was ok. Oakley our oldest son at age 11 told us how much he missed us and loved us and could not wait to see us.
Our world was turned upside down when Dr Parikh spoke the following, ”Ayden has DNA Depletion Syndrome and the prognosis is that he will not live much longer.” Shock, disbelief, anger all were flowing through my body and the only thing that I could think of is why is our baby going to die? Neither Becky nor I remember much of the visit or exactly what the doctor was telling us. Over and over in my head I kept hearing him say,”enjoy every moment with him because he will only get worse from this point on." We hid emotions when the phone rang and Courtney our 14 year old daughter called as school had gotten out and she was excited to know what we found out about her baby brother. We were able to muster up the courage to hide our emotions and tell her it was ok. Oakley our oldest son at age 11 told us how much he missed us and loved us and could not wait to see us.
We went to see a Christian healer and as we arrived we made our way to the service. Going in it was tough not being skeptical. We decided we were going to do any and everything possible. We adopted the bible verse Philippians 4:13 as our family motto, “All things are possible thought Christ our lord who gives us strength.” Stepping into the sanctuary you could feel the energy and listening to Mr. Smithwick speak was amazing. He said that a family with a little boy needed to speak directly to him. There was no doubt who he was talking about. After the service we introduced ourselves to him. Mr. Smithwick and several members of the church laid hands on Ayden and began to pray. I have read stories about feeling the Holy Spirit but not experienced it like this. The goose bumps stacked up and as they prayed for Ayden the tears flowing from our eyes were uncontrollable. Mr. Smithwick told us to continue to do what the doctors said and the tests would still show he had DNA Depletion but over time we would see exactly what God had done for Ayden.
We began getting results from Cleveland and all things still pointed to DNA Depletion Syndrome. Ayden’s liver enzymes had been at a dangerous level. At their highest they were around 550, normal is in the 50’s. When we first went to Cleveland Ayden was taking 14 different medicines, and he was losing hair in small patches. After the initial healing service all of Ayden’s test results began to improve. His liver enzymes dropped. He was tested every 2 months and everything was going great. I was driving to work one morning and I had tried so hard to be strong and I believed that God had healed Ayden but I was scared and upset and angry. I prayed and, after my prayer I turned on the radio and the song by Kutless, Faith Can Move a Mountain came on and I was overcome with a sense of calmness. The words tell us that, “Impossible is not a word just a reason for someone not to try.” It reminds us that miracles just happen and silent prayers get answered and it just restored my faith.
June 6, 2012 was a great day for the Billingsley Family. We arrived in Atlanta for a check up with Dr. Shoffner to see how Ayden was doing. The date June 6th is known as D-Day, now for us it is known as ND-Day, which stands for No Disease Day. Dr. Shoffner gave us the news that Ayden not only did not have DNA Depletion Syndrome, he could not classify him as mitochondrial. All of our prayers had been answered. The nightmare that we had been living was over. I watched a transformation happen right in front of my eyes, my wife who had given everything that she had to make Ayden well became her old self. She is the one that put all of her needs behind his and the thought of losing him changed her. We know that not all things will be easy for us and that Ayden will have struggles that most others will not, however with my own eyes I have seen faith move a mountain." Shane Billingsley
