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!
You are in my thoughts. Your strength in attitude will make such a difference. I wish you the best.
Kari,
Your story touches my heart in a very deep place. My son Jamie was 27 when he was diagnosed with it also. Lost him 20 years ago, but is still in my daily heart. He, like you was so very brave and courageous. He made our lives, and all that knew and loved him, so much easier. We were the ones he was concerned about.
You have my love, thoughts, and prayers.
Pray that breakthrough is coming soon.
Jim
Your family is beautiful, as is your strength and determination in the face of this disease. Keeping you and all those who fight this battle for and with you in my thoughts. I look forward to hearing about the positive difference you do make!
My husband was diagnosed on April 27, 2015
Dear Kari,
Your story is very touching,and your determination very inspiring. We all must do our share to combat this disease. Finally , I believe people start to know about it . There is a lot of research done actually and an effective treatment is bound to happen soon. Hang on there, dear one. You have a beautiful family. My best to you Kari.
God Bless you for your courage to fight this horrible ALS. I lost my daughter 2 years ago. She was 49. They are researching ever day for a cure. I am keeping you and your family in my daily prayers. Keep fighting Dear, the cure will come soon. Hugs Annie
Kari, you sound quite a bit like my little sis. She was diagnosed in 2011 when she was 37 years young. We also lost our mother to this beast in 1991. We’ve got 30+ family members who died from ALS. We are strong believers in research, advocacy, awareness, & living your life. Your family is beautiful. I look forward to “hearing” your voice for a long time.
Hi Kari,
Your determination to spread awareness is inspiring! Remember, you’re not in this alone, and we”re all in it together. Will be keeping you and your family in my prayers!
Rich
#amazinglovesustains
You go, girl! I have all the faith that you can beat this thing (and me too!). Praying for you and your lovely family.
I lost my daughter Natalie in September 2008 ,she was experiencing a few twitches the later part of her pregnancy with my grand daughter Ruby ,we also traveled to Mayo Clinic but they couldn’t give us an answer until they ruled 4 other possibles out and in July of 2006 ,little over a year from having Ruby they ruled it ALS ,Natalie fought hard never complained ,She is missed terribly by her daughter now 10 ,she had just turned 3 in June and Natalie passed in September .It is very hard for her. She doesn’t remember her mommy but she is very strong just like her mommy ,I will pray for you Kari ,keep up the fight ,I’m so sad you are going through this love and hugs
Kari — I will say a prayer for you and your family. My niece was just diagnosed at the age of 45 about a month ago. It will be a long haul for the family but fortunately we have a very large supportive family.
Hugs to you and your family.
Kari,
I was diagnosed about 20 days before you. I’m 53 and when I begin to feel sorry for myself I will think of you. At 28 you should not have this awful disease. God Bless you. I’ll pray for you.
Hi, don’t think we have ever met. I am your dad’s cousin and I live in Baltimore and I am an occupational therapist in a rehab center. You have my coworkers and I praying for you. We did the ice bucket challenge last year and we are going to do it this year! Keep positive! You can’t give in or give up!
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I have the disease called ALS, I have all sorts of issues that I am fighting with. But I am not alone I see, be blessed Kari Robben I hurt and feel with you but I also am touched by the warmth in your testimony. We might meet about in a different life, we might meet again in paradise. But we do it all to His glory! Somehow.
Mine on April 17, 2015.
Dear Kari,
Your story is so empowering and I would love to get the chance to share it. I am creating a ten-minute video for my genetics class on ALS and it would be an honor for me to share your story to let others know everything there is about ALS. I want to spread awareness, understanding, and hope. I chose ALS as my research topic for my class because many people do not understand how ALS really affects the body but not just solemnly for that reasons alone. I chose ALS for many reasons and not just for the research side of things. I want people to understand how they can help, how it really affects the individual diagnosis and their family, how to continue fighting with whatever they are going through, and as you say “Come what may…” I want to inspire others through ALS and with your story. With your permission, I would be deeply honored to be the one that individual. If you would be interested in me sharing your story please email me at brianna.watt@atown276.net.
Sincerely,
Brianna Watt
Kari,
I hate this disease with all my heart and soul. I hate it because it attacks all the truly wonderful people. My promise to you is to keep working until we find some therapy that will help you and protect those beautiful babies of yours.
You and your family are in my prayers.
Lou