Faith Can Move A MountainThe Ayden Billingsley Story As we were sitting in the doctor’s office of the famed Cleveland Clinic many thoughts were racing through mine and Becky’s minds. Would we finally get the answers that we were looking for? Answers that had eluded us for more than 18 months. This all began with a regular check up when our little boy Ayden had turned 9 months old. His pediatrician noticed that he had not gained any weight since his 6 month check up. This was a very big red flag and set us on a journey that would change our lives forever. We would first see a GI specialist and along the way Ayden would be seen by 10 different doctors all looking for the same thing. Why was he not gaining weight? Ayden would be put on many different medicines and we would learn a lot about things that were not functioning correctly in his body. We learned his body was not producing pancreatic enzymes. We found out 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 or what we needed to do to help our baby. He would be tested, x rayed, cat scanned, poked prodded and just about everything imaginable and still nothing conclusive. That is what led us to the Cleveland Clinic. It is believed that when you are 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 us 6 months to get an appointment with him. For many months we prayed for answers and as we made the trip to Cleveland Becky and I were very excited and optimistic about the idea of knowing what was actually going on inside of Ayden’s body.
To this day I cannot fathom how one sentence can change everything for an entire family, but for our family our world literally 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? Why GOD would you punish this innocent little boy. Neither Becky nor I really 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. The number of tears that fell that day in Cleveland would have raised the tide in Lake Erie. We had to hide all our emotions when the phone rang and it was Courtney our 14 year old daughter on the other end. School had just gotten out and she was so excited to know what we found out about her baby brother. Somewhere deep inside of us we were able to muster up the courage to hide our emotions and tell them that things were 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. Its moments like those that will forever be frozen in my mind.
The 7 hour drive home from Cleveland allowed us lots of time for prayer. We talked with Ayden about all the things that he wanted to do when we got home. We also tried to figure out how to tell our kids that their baby brother has an incurable disease and the doctors do not expect him to live to see his 3rd birthday. I had already figured out in my mind that it was only 134 days until Ayden’s 3rd birthday. I told GOD that I am not strong enough to go through this and I needed him more now than ever. We prayed more in those first 24 hours than I think we had ever prayed before. Looking back now I can tell you with certainty that it is in those dark times when GOD is so much with us. Only he can turn something like this into a positive. Driving on Interstate 74 about 45 minutes from home and still not knowing how to talk to our kids about Ayden a sign caught my attention. Becky and Ayden were fast asleep and on the marquee in front of the Cornerstone Christian Church it read Healing Service Feb 21. That was exactly one month away and just one day before my birthday. Could GOD and would GOD heal our baby, could this be real. I woke Becky up and told her and we began our research of the church and of Healer John Smithwick.
In our living room we sat down as a family and had a talk that I never dreamed we would be having. We told the children that the doctors said Ayden is really sick and the disease he has there is no cure for. We have to enjoy the time we have because Ayden will not be with us long. We told them that we know that eventually he will begin to lose eye sight, hearing and then the function of his arms and legs, and then his organs will begin to shut down. We have to make his time the best that we can. We cannot live scared everyday, we have to enjoy our time and not fear what may happen. That was so far from the truth. Becky and I feared every second for our baby and I could not shake the why GOD? Over the next several weeks we did lots of fun things and instead of enjoying them all I could think of is this our last movie as a family? Is this the last time to go to Chuck E Cheese? This obsession was eating me up. The words of the doctor and this terrible disease changed everything about our family. My wife I did not think would ever be the same. Courtney was a young lady that had the fun and life sucked right out of her before our very eyes. Oakley being so sensitive just did not know how to deal with all these emotions. Somehow in all of this being Dad I had to be the rock and try to be strong even when it was the last thing I wanted to be.
The day finally arrived and we made our way to the healing service. Going into things it was tough to not be a little skeptical. We had 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. And then all of a sudden he said that a family with a little boy needed to hang around to speak directly to him. There was no doubt who he was talking about. After the service we introduced ourselves to him and you really could feel the energy. Mr. Smithwick and several members of the church laid hands on Ayden and began to pray. I have never felt something so amazing. I have read and heard stories about feeling the Holy Spirit but not experienced it like this. To say that GOD was with us was an understatement. He did not put his hand on our shoulders he held us in his hands. The goose bumps stacked up and as they prayed for Ayden the tears flowing from our eyes were uncontrollable. The presence of GOD was everywhere and I had no doubts that GOD had healed our baby. Mr. Smithwick told us to continue to do what the doctors told us to and the tests would still show that he had DNA Depletion but over time we would see exactly what GOD had done for Ayden.
Over the course of the next few months Ayden would tell us that he would see Jesus at church. This really scared us, not that he was seeing Jesus but why was he seeing Jesus? Was it to take him home? We talked with our minister and several other clergy that all said this was a good sign. That Ayden was really close with Jesus and that kids have a gift that we lose as our minds get clouded. I would love to have a little of that child like wonder in me. The most amazing thing began to happen and we were able to witness this on a near daily basis. Ayden has been blessed so much and he is so in tune with his surroundings. Our daughter Courtney noticed one day that lots of little kids like to touch Ayden. When we were at the aquarium she noticed many little kids touching Ayden’s hand and then just walking away. We did not understand other than the thought that those kids see something special in him and they know that he is close with GOD. We would see this happen on a regular basis anytime that we went places where other children were. We believe that GOD truly has something amazing planned for Ayden and we are witnessing something unbelievable.
We wholeheartedly believed that GOD had healed Ayden but we were not taking any chances. We were going to do whatever we had to do to ensure his health. He would take him to 2 Amish healers to see if they could heal Ayden. The first healer was located in northern Indiana and his name is Solomon Wickey. Mr. Wickey is well known and highly respected. To see him you have to write a hand written letter to him send it and he returns it with only the date on the original letter. We drove to Auburn, Indiana to meet with Solomon. We spent about an hour in the waiting room before getting our opportunity. As soon as we walked in and sat down Solomon came over and told the others in the room that Becky needed some attention. He knew that stress was taking its toll on her and gave us some advice on how to deal with it. He examined Ayden through me. He would push my arms down and do some counting and held onto Ayden and told us that there was something that was once there but is no longer. He said he did not have any real concerns, that Ayden would be fine. His body will adjust and he will start to grow. 2 months later we would see another Amish Healer in Scottsburg, IN and the experience was very similar. He too told us we have nothing to worry about. Ayden had something very bad that had been removed and that he would fully recover.
Around the same time that we saw the first healer we began getting results back from Cleveland and all things still pointed to DNA Depletion Syndrome. Ayden’s liver enzymes had been at a very high and dangerous level. At their highest they were around 550, normal is in the 50’s. Never at any point since Ayden has been tested had his levels been in the normal range. When we first went to Cleveland Ayden was taking 14 different medicines. There was a smell that came from him that just did not smell healthy. He was losing hair in small patches and all of these things had us so scared. Looking back it is easy to see that these things were all associated with his disease. After the initial healing service all of Ayden’s test results began to improve. His liver enzymes were dropping each and every time. He was being tested every 2 months and everything was going great. Even with all the positives things we had going on, we could not escape those words that our baby would not be with us very long. I was driving to work one morning and it all came to a head for me. I had tried so hard to be strong and I believed that GOD had healed Ayden but I was scared and upset and very angry and I lashed out at GOD. I said why would you do this to Ayden?. Why does he have to go through all of this, would you really bring him into the world to then take him from us? I just could not help but to break down and cry. I sat in a parking lot and prayed so hard and cried and begged and pleaded with GOD and I told him that I do believe that Ayden is healed but I still needed a sign. 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. GOD had spoken to me directly through a song and told me things will be ok and just continue to keep the faith. That was the first time that I had ever heard that song and it immediately became my favorite. The words are so inspirational, they 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. I can’t say that I was still not worried about Ayden but in my heart I knew from that point on that he would be ok.
Sometimes GOD can give us a little nudge but sometimes he has to really hit us hard to get our attention. Ayden had an appointment with a dentist to have some teeth repaired. Between his medicines, his disease and the high calorie diet he was on all of his teeth were falling apart. He would have surgery to repair all but 2 of his teeth. After leaving the dentist we were once again upset. Surgery poses a real risk with mitochondrial patients; many have very adverse effects to being put under. When we left we stopped by a local store and did a little shopping we had some time to kill before we were meeting Granny for lunch. Like most 2 year olds Ayden wants everything that he sees. Luckily for us if we let him hold it while in the cart he is fine and will let us put in back on the shelves. The funny thing is we have to put it "where it belongs." On that particular day Ayden found a shopping cart and he wanted to do some shopping of his own. He and I went off to so shopping. Ayden went up and down every isle but was not putting anything in his cart. We finally made it to the greeting cards and Ayden loves to look at the card and usually will pick several that he "has to have." Today Ayden looked through the cards and picked up one card. Not one with Buzz or Woody no Spongebob not even his favorite Thomas the Train, instead he picked up one card that was green and not particularly attractive to a 2 year old .He put it in his cart and then proceeded to find mommy. The card fell out of his cart and I picked it up and it simply said; 'Behold, I will bring you health and healing; Jeremiah 33:6 At that moment I felt it was a good sign and we decided to buy that card. After lunch we went home and in the mailbox was a card from the Vatican that let us know that someone had taken the time to ask for Prayers for Ayden. For the next 60 days the Vatican would be praying for Ayden. In the card the first prayer listed was Jeremiah 33:6. My eyes filled with tears, and goose bumps covered my body. I could not muster the words to tell Becky what I believe had happened. I truly believe that GOD was speaking directly to us and used 2 separate greeting cards to convey the message. A little wink!! Of the thousands of cards in the store what are the odds Ayden picks that one. He was directed to do it and to let us know that he was going to be ok. Sometimes GOD sends us little subtle messages and other times he has to hit us over the head to see what is going on around us. I thank GOD for giving us that message and it truly did help us to relax and know down deep that Ayden is going to be fine.
To say that GOD uses our struggles to find the good in others is another understatement. I am a teacher and was teaching at Jennings County High School in North Vernon, Indiana when Ayden was diagnosed. Every year my students do a community service project to help someone in our community that may be in need. A group of 8 students decided that they wanted to do something special for Ayden. That day Ayden’s Army was created. They came up with an idea to put on a dance and sell bracelets and t shirts for Ayden. My wife drew the picture on the front of the shirt and our family came up with the message on the back. “The Battle he must fight. He and his soldiers marching hand and hand toward victory.” Word spread quickly and before you knew it people from all across the US was praying for Ayden. We received many calls, letters and emails telling how the courage of our little boy had inspired them. His website
www.aydenbillingsley.weebly.com was getting hundreds of hits per day. Currently Ayden’s Army has members in 34 states and 7 foreign countries. He also has a strong following amongst the US military men and women serving overseas. Ayden has touched and inspired more people in his short life than I have in almost 40 years. We will forever hold those original members of Ayden’s Army near and dear to our hearts.
During the fall of 2010 we decided to go to Atlanta to see doctor John Shoffner. Dr Shoffner is the number one mitochondrial specialist in the United States. He has conducted more research in his field than any other doctor. Dr. Shoffner did confirm that Ayden Suffered from a mitochondrial disease and could not tell us much until more genetic research was done. The whole process took about 9 months but there were able to find a mutation in Ayden’s makeup that was consistent with a mitochondrial disease. The treatments for most mitochondrial disorders are the same. He would continue to take what is referred to as the Mito Cocktail. From the time that we went to Cleveland to our visit in Atlanta many things had changed for Ayden. He was gaining weight, his liver enzymes continued to decrease, his appetite improved, and his muscle strength and coordination improved. In all areas we were seeing God’s hands all over Ayden and his improvement.
Talk about a warrior, Ayden is a warrior in every sense of the word. He has been through so much with all of his doctor visits but he is always a model patient. It breaks our heart to see how well he handles getting shots, or giving blood, because he is so accustomed to it. At no time does he ever complain he just asks,” Am I getting a shot?” Every time that Ayden had to give blood his tests came back better and better. His enzyme level decreased with every test. Finally in the fall of 2011 we got a call that he had been waiting so desperately for. Ayden’s GI specialist called and said his liver enzymes for the first time ever were normal. He had gone from over 550 down to 53. What Mr. Smithwick had told us over a year ago was starting to show. At this point Ayden was already 4 years old and he was only getting betting. There were set backs along the way and he was sick more than most kids but our fears were slowly beginning to fade away. I go back to some of his first visits with specialist when they would say we do not know what is going on but by the time he is 4 or 5 you will not see any difference. After Cleveland that imagine was all but erased from our minds. As the days went on you could truly see him doing most of the things that others his age were doing. Ayden has always been very intelligent but has lacked with some strength issues but he really was catching up.
September of 2011 would give us a day that we thought may never happen. Ayden Shane Billingsley would have his first day at Waynesburg Christian Preschool. This was truly a miracle, a day that we were told would never happen and here it is. He is all dressed up with his book bag and is going to school. Having 3 children and knowing the significance of the first day of school for each, but this day was a little more special. Bubby, Sissy, Mommy, and Daddy all smiles knowing that a milestone had been reached. School would bring on its own share of problems mainly Ayden being sick a lot. Ayden had not been exposed to most of the germs that he would see at school and he missed a lot of school. In fact he would have pneumonia 3 times and would be in the hospital for a week in very serious condition. Even though we know that he is healed his body is much more susceptible to illness than other children. Even when he is feeling bad you can always count on his amazing smile to brighten any room. He is always positive and concerned about everyone else. In all things that Ayden does he tries to put others first. When he gets a shot or gives blood and gets a sticker he asks for three not because he is selfish but he wants to make sure Bubby and Sissy get one also. In fact he would rather have none if he can’t have one for each of them. For a boy of his age we are so encouraged about how much of a Christian he is. Every night he says his prayers and continues to pray for children that we have met that are sick, for all the sick kids he asked Jesus to Heal them, he thanks Jesus everyday for healing him. A story that will forever be etched in my mind is of one when Ayden was really sick, about a month before we got his diagnosis. I was coaching basketball and was about 2 hours from home and Ayden was running a really high fever. As soon as my game was over I called home and my wife says, “You will not believe what your baby just said, he saw a commercial for St. Jude’s and asked, “Mommy can we ask Jesus to heal sick babies?” I got choked up and was reminded once again just how amazing our little boy is. Even when he is feeling terrible he always puts others first.
June 6, 2012 was a great day for the Billingsley Family. We have arrived in Atlanta for a check up with Dr. Shoffner. The date June 6 has always been one that was important to me as a historian, on June 6,1944 the US invaded the beaches of Normandy in what is known as the D-Day landing. 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 even classify him as mitochondrial. We could not believe it we were in absolute shock. All of our prayers had been answered. The nightmare that we had been living was over. No one will ever be able to erase the words of, “enjoy every day because he will not be here long”, but we as a family can get past them. We lived in fear each and every day and now we can focus on living and not on dying. I watched a transformation happen right in front of my eyes, my wife who had given everything that she has to make Ayden do so well became her old self. Becky had sacrificed more than anyone, she is the one that was always with Ayden and never left his side. She is the one that put all of her needs behind his and the thought of losing him changed her. Now she was back. We know that not all things will be easy for us and that Ayden will have struggles that most others will not. He also knows that we serve an amazing GOD and the scripture is true when it says all things are possible through Christ out Lord. With my very own eyes I have seen faith move a mountain, I have witnessed a miracle and watched one little boy leave an impact on this world that will never be forgotten.
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