Kari Robben, diagnosed in January 2015 at age 27.

I was diagnosed with ALS on January 26, 2015, a little over a week away from my 28th birthday. I am the mommy to 3 beautiful little ones, Ella (5), Sofie (3), and Emmett (1), and the wife to an amazing and supportive husband. I began experiencing hand weakness, cramping and muscle twitches while I was pregnant with my son. Everyone assured me these were caused by pregnancy and would go away after birth. After he was born, I knew something was wrong, because things weren’t going away, they were getting worse. Around this time, the Ice Bucket Challenge was going on. I had never heard of ALS before, but after watching a video about Pete Frates, I knew what was wrong with me. I told my husband I had ALS and needed to go to the doctor. So the visits began, orthopeadic surgeons, occupational therapists, neurologists, physical therapists, family doctors. Test after test came back normal, a little more disappointment each time. Then after a long week of testing at the Mayo Clinic, we had an answer.

I had ALS. I will never forget this day, how do I explain to my daughters what was wrong with me? How do I live with this? This isn’t something I can beat, how do I cope?

Then I realized something. I cannot let this beat me. I have 3 beautiful children who need me. I have an amazing husband who needs me. I have a large family who needs me. I WILL LIVE WITH THIS. I refuse to show defeat. I refuse to sit by quietly and fade away. We have an amazing community who has shown an outpouring of support. Before we were married, my husband and I would always tell each other “Come what may…” This is how we live our lives. ALS has changed us but it does not define us. I have time now, so I am using my voice to spread awareness. I am trying desperately to reach Tim McGraw to kick off the Ice Bucket Challenge with me. God gave me a voice, and I want to use it. The louder I am, the more people will know of ALS.

So for now, my hands may be weak, I may stumble some times, and I sure am not graceful getting off the floor!! But for these 4 people, I WILL live with ALS. Every day, I will FIGHT, and every day I tell myself “Come what may…” because I know God has my back. ALS will NOT win!