Photo by Jeff Rogers
When our son was born, he was normal. At three months old it was like a switch was flipped. He started throwing up. Our first child had problems with lactose intolerance, so we thought that was it. We went to the doctor and he changed his formula. But he didn’t get better. Months later we spent six days in the children’s hospital running tests. They came up with a diagnosis of failure to thrive. This is basically a diagnosis that they give when they don’t know what is wrong but they know something is wrong. We battled this for four years. It was back and forth to hospital doing feeding studies and running tests. At four years old he was well underweight at 20 pounds. Every time he would gain weight, he would get sick and lose weight. The only thing that would stay down was his formula in the bottle. We stopped going to the hospital because it wasn’t helping.
It is amazing how God works. When our son was five he started going to a Methodist preschool. The mom of another child started talking about a severe illness her child had. As she described his symptoms, it sounded just like what our son was going through. We told her about our son—about his illness and all that he had been through. She said that she felt sure he had the same disease as her son, a rare disorder called eosinophilic esophagitis (EE). Not long after this, their family moved away. Her husband was a microbiologist and had taken a job at the college in our town but was only there for two months and then they moved away. But two months was long enough for us to have the conversation with his wife. There is no way we would have found out about the disease if we hadn’t met her.
We took our son back to the doctor at the children’s hospital. We told him that we thought our child had eosinophilic esophagitis. Turns out this hospital has the number one clinic in the world for eosinophilic diseases! After several months on the waiting list, we were finally able to get our son an appointment in this clinic, and they diagnosed our son with eosinophilic esophagitis just as we suspected. They told us to eliminate the 10 foods that most commonly cause allergies. We did this for several months, but the results of his scope came back worse than the first time. What could it be then? The doctor called me personally and said the results of his scope were very bad. He said our son had to have a feeding tube or he would die. They told me how they do the feeding tube and how they cut the stomach and put it in. I was so upset that I cried, but it seemed we didn’t have a choice. In 2011, he got the feeding tube. It was so hard on him because for four days he laid in the bed and he normally has lots of energy and is a people person. I worried that he was shutting down.
The feeding tube bypasses the esophagus (the tube that takes food from the mouth to the stomach) and goes directly into the stomach. For three months, he wasn’t allowed to have any food by mouth. All of his nourishment went through his tube into his stomach. We put a special formula into the feeding tube to feed him. In three months, he gained 10 pounds and his esophagus was healed so he was approved to eat some things by mouth. But what he took in by mouth was not providing his nourishment. We were still putting special formula into his feeding tube, and this is what provided the nourishment he needed to live.
We had another problem. The formula cost about $1,500 per month. Insurance wouldn’t pay for this and I had lost my job in 2015, so money was tight. We couldn’t afford to buy the formula.
I had read about a law passed in Illinois that mandates insurance companies to pay for the formula for EE patients who need it in their tube feeding to survive. In my mind, this was no different than insulin for a diabetic patient. Our child had to have this to survive.
Our state representative helped to get a bill passed in our son’s name that would ensure Kentucky insurance companies would pay for the formula needed for survival in EE patients. As a part of this process, our family testified before the state legislature’s insurance committee. There was a unanimous “yes” vote in that committee. A unanimous “yes” vote had never happened in that committee. We also testified in a House of Representatives committee and a Senate committee. So many prayers were being said. Everything fell into place, and the bill became a law in only two months!
Life is still hard for our son. He is 60 pounds at 13 years old and has had 27 scopes in seven years. But even after everything our son has been through, he is still is so joyful. God made him an independent and positive person, and we are so thankful for that. He loves people and sings and plays the drums. He is a blessing to many people.
Through all of this, we have realized how many people have prayed for our son and how God has answered prayers. One day we were at a rest stop and a woman saw our son and said, “I have been praying for you.” She was from another state, and somehow her church found out about our son’s struggles and he had been on their prayer list. At critical moments in our life, God has provided in some way—the mother at the preschool, the specialty clinic at our hospital, the law that passed in two months when we were out of money and couldn’t afford the formula. God’s provision and timing have amazed us again and again, and we are so thankful.
A Million God Stories is a Christ-centered ministry which offers a platform for Christians from all streams of Christian faith to give praise for how God has worked in their lives. Christ heals in infinitely creative ways and we acknowledge that His way of helping may differ from person to person.
