Motherhood alone has its fair share of struggles, but imagine being a wife and mother to 3 young children and living with a fatal neuromuscular disease that slowly robs your body of its ability to walk, speak, swallow and breathe.
With an average life expectancy of 2 to 5 years, your priorities dramatically change.
Meet Kari Robben, a Cincinnati mom living with ALS. The following is her story in her own words.
I was diagnosed with ALS on January 26, 2015, when I was 27 years old and my children were 4, 2 and 7 months. I began experiencing symptoms while I was pregnant with my son Emmett. I started having weakness in my hands which was attributed to pregnancy induced carpal tunnel. My hands were so weak I could no longer turn the key in the doorknob. I was having muscle cramping all over my body and had started having muscle twitches in my arms. I also noticed feeling like I would fall down the steps because my muscles would spring me forward.
I was reassured by everyone that once I had the baby, everything would go back to normal.
When I delivered Emmett, I felt different then I had with my other births. I felt weak and didn’t feel like I could push the way I was supposed to. After Emmett was born, I waited for the symptoms to subside but they didn’t. New symptoms began appearing like increased right-hand weakness and not being able to straighten my pointer finger without really focusing on it. We would try to make light of the looming seriousness, calling it my witch finger. I started overstepping myself and running into door frames.
One night, I was lying in bed with my husband after nursing my then two-month-old when I decided to Google my symptoms. Hand weakness, muscle spasm, muscle wasting, muscle cramps. The first thing that comes up on the list is ALS. I refreshed the page hoping that somewhere inside the Internet the wires were crossed. But the same information came up again; two to five years of life expectancy and losing all function of your body. I woke my husband up crying, saying that we needed to make an appointment with a doctor. Around this same time, the ice bucket challenge had taken off and everywhere I looked I saw people talking about ALS, or Lou Gehrig’s disease. After reading an article about Pete Frates, I knew that I had ALS.
My primary care physician basically laughed in my face and said I didn’t fit the criteria to have ALS. I wasn’t a man, I wasn’t old, and I wasn’t a veteran. After seeing her, I saw an orthopedic surgeon, an occupational therapist, a neurologist for two months, a physical therapist, and no one could find an answer. In January of 2015, we made the long drive to the Mayo Clinic in Jacksonville, Florida. I underwent a week of testing to finally receive a diagnosis of ALS. Six months after my concerns started, 4 MRIs, 2 EMGs, more vials of blood then I could count, a spinal tap, and 7 doctors later, I was able to finally have an answer. My husband and I struggled to move forward after the diagnosis, but we made a promise that we will fight and live for “today”.
Things are hard but I always try to stay positive and be thankful that I am able to still take care of my children and live my life. I can’t do buttons. I can’t do zippers. I have a hard time writing. I can’t open lids or caps. My muscles are stiff and my twitches are increasing. My arms and shoulders are weak which makes carrying things difficult. I’ve had to resign from teaching because I no longer could teach my students the way they need to be taught. There are days when I have doubts and fears and feelings of jealousy, but the things I can do outshine everything I can’t do. My legs are strong, my breathing is strong, and my determination is even stronger. I have three beautiful, amazing blessings from God that are my strength. Someday soon they will know that something is wrong with my body, but they will also know it will not control me. I live my life for them and will fight until the end. Every day is a blessing and I see God’s love more and more now.
I live for today and pray for tomorrow.
Kari and her family reside in Harrison, Ohio. Her husband is a firefighter with Liberty Township and the City of Harrison. You can help Kari and her family by donating to or participating in the Cincinnati Walk to Defeat ALS