“Our family owes everything to St. Jude. There is no doubt that if it weren’t for St. Jude, we would have buried our kids by now. No doubt.”
In 1996, my wife, Suzan, and I received a phone call that took our breath away.
“We’ve reviewed your children’s medical records,” the doctor told us, “and there’s really nothing more that we can do. Just enjoy the time you have left with your kids.”
How could this be happening? We were an average family, living paycheck to paycheck in middle-class America. But our infant son, Mitchell, had life-threatening breathing problems; our 6-year-old daughter, Alee, had partial paralysis as a result of a stroke.
There was no doubt in my mind that we were going to bury these two kids, and in short order. I don’t think “panic” can even hold a candle to where we were in our thought process. We were living a nightmare.
I sat down at the desk of a family member who is a funeral director.
“I don’t have the money right now,” I told him, “But if you will allow me to bury these kids with dignity, I’ll pay you every nickel I owe you.”
A rough beginning
Shortly after my wife had given birth to our second child, things had begun to go terribly wrong. Almost overnight, we went from being a normal family to watching both of our children almost die. We had been in and out of hospitals for many months, and the children had been given a long list of diagnoses—from asthma to lactose intolerance to a rare genetic disorder. But no one, not even the best specialists, could tell us what was making our kids so sick.
We had two sick babies and really didn’t have an answer about what was going on.
When Mitchell was 6 months old, we finally got that answer: Our children had been born with the human immunodeficiency virus, or HIV. We were devastated. In 1996, my wife and I knew nothing about HIV—only that it was a death sentence.
Like most people who contract HIV, my wife had carried the virus for many years without knowing it. Ten years before, her fiancé had died. We now realized that he most likely had AIDS.
Alee and Mitchell were put on a regimen of medicines. Two weeks later, our daughter had a stroke. Mitchell had the worst case of HIV that our local medical community had ever encountered.
The doctors offered us no hope.
“You’re telling us to watch these kids die?” I asked them. I was determined that we would not let that happen without first exploring every avenue.
So that started my quest. I got on the phone and started calling HIV clinics from Washington, D.C., to San Francisco. I don’t know the exact number of phone calls I made, but it was in the hundreds. Time after time, people suggested that we take our children to an institution in Tennessee, called St. Jude Children’s Research Hospital.
“That’s where I would go if I were in your shoes,” said a doctor from Houston, Texas. “That’s where I’d take my kids.”
We put our two little broken babies in the back seat of our ratty old Escort, and with a prayer and a few dollars in our pocket, we headed to Memphis. That was the beginning of new life, new hope.
As soon as we got the referral to St. Jude, we put our two little broken babies in the back seat of our ratty old Escort, and with a prayer and a few dollars in our pocket, we headed to Memphis.
That was the beginning of new life, new hope.
From the moment we pulled into the gate, the staff at St. Jude started taking care of us. They answered our questions. They knew instantly what the course of action should be for our children. Dr. Patricia Flynn and her staff got the kids started on their treatments, and then we loaded up our babies and headed back home.
I didn’t know it then, but the miracle was in place and was starting to happen. All of the treatment we had received before coming to St. Jude had been a failure, so we didn’t really know what to expect. But within a week or two, our kids’ eyes were bright, their appetite had picked up, and things had begun to change.
Those changes began to instill hope, because we started seeing our children returning to us. A month later, a St. Jude checkup revealed that the treatment was working very well. At the following checkup, the news was even better.
As time went by, we felt blessed and wanted to give back by sponsoring a child who was HIV positive. One day, Suzan found the website of an orphanage for HIV-positive children. On that site was a video of a 3-year-old Ethiopian boy singing “If You’re Happy and You Know It.” Watching that video, we both began bawling like babies. Instead of sponsoring the little boy, we initiated the adoption process.
Thirteen months later, we brought Yonas home.
Here’s to hope
Through the years, the St. Jude medical team has kept our family on the right track medically. And our social worker, Chris Sinnock, has helped guide Alee and Mitchell through issues of disclosure they faced as they entered their teen years.
Thanks to St. Jude, all three of our children are thriving. Alee recently graduated from college and will soon be teaching English and working on her master’s degree. Mitchell is a high school senior who plans to become a pharmacist. Yonas is now in the sixth grade. Who knows what he will do?
Our family owes everything to St. Jude. There is no doubt that if it weren’t for St. Jude, we would have buried our kids by now. No doubt.
If I could meet the people who donate to the hospital, I would say, “Thank you.” And if those donors would form a line, I would hug each and every one of them. People who support St. Jude give hope to families who have no hope; they give a chance to children who have no chance. And due to that overwhelming generosity, parents like us get our kids back.
Abridged from Promise, Winter 2014