In the darkest days, God’s plan unfolds for a family dealing with a rare disease.
Going back and remembering what those weeks were like is scary with a mix of unbelievable wonder. It was a time of feeling complete helplessness in trying to understand what was happening to our daughter Ellie. This bubbly, bright-eyed, hilarious, and active 18-year-old lay in a hospital bed unable to move the right side of her body or speak coherently.
A feeling of helplessness
It started months before with on-and-off fevers and severe sore throats. Every time Ellie was tested for COVID, strep throat, and mono, but all the tests repeatedly came back negative. So in March 2022 when it happened again and she was given another antibiotic for tonsillitis, none of us were surprised.
The surprise came when I went into her room one Sunday morning to check on her before church. She was lying on the ground. She looked up at me—actually looked through me—like she didn’t know who I was. I asked her if it was her throat that hurt or her head or stomach. Her response was something I will never forget. She replied, “It’s my personality.”
I knew at that moment something was seriously wrong. I told her we were going to the emergency room. I dropped the younger four children off at church and came back to help her. At that point she kept giggling uncontrollably and said she could not walk. I asked my oldest son, Jay, to help me carry her to the car. A few miles into the trip, Jay asked me to pull over so he could drive and I could be with Ellie in the back.
The rest of the trip felt like an eternity as she lay in my arms and just slept. The whole ride I cried and tried to process it all. The feelings of panic, fear, frustration, and helplessness were overwhelming. I replayed in my mind 18 years earlier, when as a baby she would lay that same way in my lap and sleep. I was thankful Jay offered to drive, and we were headed somewhere to figure out what was going on. I knew God was in control, but I just didn’t know what his plans were at that point.
A glimpse of God’s plan
God always has his plans, and that was evident in the hospital. The entire day into the evening there were so many tests taken, so much blood drawn, and so many theories. The doctors started her on a strong dose of steroids and monitored her all night. In the morning there was not much change. The diagnosis floating around was meningitis.
A few hours later a new doctor came in and talked to me about how he was on the phone all night and in meetings all morning with specialists from all over the state. Ellie was a rare case. It was then I started seeing God’s plan unfold. The doctor looked at me and humbly said that Ellie needed to be transferred to a hospital in Madison where she could be surrounded by specialists. I was thankful, hopeful, and scared all at the same time.
The hospital in Madison had already scheduled an MRI. After a three-hour scan, they said they found lesions up and down her spinal cord as well as in her brain. I just sobbed uncontrollably because my mind went to dark places—to the worst-case scenarios. The doctor grabbed my hand and said he was a father and would make it his mission to find a clear diagnosis to help start the road to recovery. He thought, at that point, she had what is called Devic’s Disease. Now the process of waiting for the endless tests to come back began.
Plan A was to do five days of a heavy dose of steroids to calm down her immune system, which was basically in overdrive. There was small progress in the first few days, but after the fourth day of steroids, they decided she wasn’t progressing as fast as they would like to see. This is where God really started to unfold his plan and show his power.
A neurologist in the area heard of Ellie and wanted to see her charts and weigh in on the decision-making process. He suggested a therapy called plasmapheresis. This process involves a needle being inserted into her neck, traveling to an inch from her heart. Her blood was then separated into red cells, white cells, platelets, and plasma. The plasma full of the bad antibodies that were causing all this was discarded and replaced with a substitution fluid.
When they did the surgical procedure to insert the needle into her neck, it was the first time I saw Ellie shed a tear. The process was intense and, even though she was numbed for it, she could still feel the pressure. After the first almost-six-hour plasma exchange, we started seeing immediate results. Soon she could lift her leg a few inches off the bed, she was saying more than one- or two-word answers, and she was actually initiating conversations. Ellie endured this plasma exchange five times, once every other day.
A show of God’s power
The entire time we saw so many miraculous things. So many specialists would come in and just look at her in awe. She had to relearn how to stand, walk, write her name—all the things that we take for granted every day. The whole process was so exhausting, yet fulfilling.
During that time, I realized the strength of my daughter. It definitely didn’t come from me. I was the one crying in the corner. I was the one asking, “Why her?” I was the one wondering if she ever was going to be Ellie again. She was the one showing strength. With every needle poke, every long procedure, every two-hour vital check, every exhausting physical therapy session, she would just smile and say, “Okay, now what?” God showed his power through her. He used her to show his strength.
After about two weeks, Ellie was released into a rehabilitation center. During her week in rehab, she made huge strides physically as well as mentally. Her goal was to walk out of rehab on her own. It happened. Only by the grace of God.
Ellie was officially diagnosed with ADEM (acute disseminated encephalomyelitis). Basically it started as the Epstein-Barr virus (a type of mono), and her immune system attacked itself. It is extremely rare.
Preparing to write this article, I reread some of the blogs I wrote during that time. I couldn’t help but relive it all. The worry. The fear. The unknown. I also reread comments people made—people I didn’t even know who were praying for her. Countless people offered prayers, support, meals, and gift cards. I am still in awe. I am in awe of people’s graciousness. I am in awe of our powerful God. I am in awe of my now back-to-college, running, jumping, smiling, and happy daughter.
God is good all of the time. We are redeemed by his blood and in his care. Thank you, God. And thank you for giving me my Ellie back.
Author: Jennifer Yahnke
Volume 109, Number 12
Issue: December 2022