Steven was born on a beautiful day in July, in the country Island of Fiji where we were doing missions work. I had a long and problematic pregnancy and had to go on bed rest. By the fifth month of gestation the doctors thought he wasn't growing properly. After an ultrasound, we found out that his femur was five weeks behind on development, compared to the rest of his body. We had no idea what to expect and no specialist could help us with all our questions. I had hopes that the doctors had been mistaken and he would be fine once out of the womb.
The day finally arrived when we got our baby boy. But at the first look one could tell that he had chronic problems. Steven looked like an old man. He was yellow with purple colors around his mouth and nose. He weighed about three pounds. His head wasn't totally formed and he had a caved-in or sunken appearance of the chest, which later we learned it was called "Pectus excavatum." He had an extra finger in his hand that got operated on and his thumbs looked like fingers.
Contrary to my hopes, Steven didn't get better. Instead he got worse. At two months, when we took him to the doctor, she basically said: "Let him go and have another one." That's when we realized we had to come back home and leave the work that we loved.
There is so much I would like to say about returning to America. What a change, what a wonderful experience! The love and care gave us hope. It was three months later when the geneticist finally broke the news to us that Steven was probably the 25th known case of "De Barsy Syndrome." This syndrome has many symptoms, including premature aging.
In March of 2011 his bones started to break and he spent most of the year at Gillette Children's Hospital in St. Paul. Steven wore a Spica cast (that covered his lower body and went all the way up his back) most of that summer. For the few days he spent at home we moved his bedroom into our living room. I took him to the doctors many times but got no satisfying answers. At that point I felt like the doctors had given up on him.
In June of that year Steven got sick with pneumonia while wearing a Spica cast. He had just gotten back from the hospital after placing a rod on his femur. We almost lost him that night. My husband called 911 and they took him back to the hospital where he was intubated for three weeks. Six months later we were told that we would bring Steven home with nursing services. Since then we've met many wonderful nurses, many of them right out of nursing school.
The nurses quickly learned that Steven loved going to church and they made sure he didn't miss a service. We never forced church on any of them but naturally they all heard the Gospel. That's when we met Margaret, Steven's RN, who will tell her story:
"When I met Steven and his family, I was immediately challenged by the kind of love his parents had for him. I knew they loved him dearly. The house atmosphere was calm and I could tell there was something special in this home. This family ministers to nurses by their lifestyle. As I continued to care for Steven, I had an opportunity to hear God's truth at the church during the times I accompanied him to church on a Sunday morning or evening. When Steven goes to church he has joy and radiance that I desired to have. He has spoken to me many times through unspoken words and through his encouragement and desire to live. I started searching for the truth and finally in November of 2014 I found Jesus through Steven. I am so lucky to have met this wonderful child who is also a friend of mine. He speaks to me each time I see him and has changed the course of my life forever."
Ageane Reed attends First United Pentecostal Church in Saint Paul, Minnesota.