I am Kali Nyberg

a family member of someone we've lost to ALS,
an ALS gene carrier

North Carolina

I drove with three kids, across country to be the one--the person she needed me to be.

Where does one begin with an ever-changing story? Two peas in a pod, mother and daughter, almost inseparable but myself being young I wanted out, out of the city out and into my own life. Long distance love isn’t hard, but it makes you miss them more.

As time went on and the years flew by I became pregnant with my third child, and it was my first boy! My mother was incredibly excited, so excited that I can’t explain it but we all shared the same feelings. During my third pregnancy my mother started to slur her words and also explained that she had some weird restless leg syndrome symptoms, twitching being involved.

She went through a lot of different kind of testing, MRIs, blood work–almost everything you could think of. Then I got that phone call; “Kali, they can’t find anything wrong with me, so my doctor said it’s either MS or ALS.”

At this time I had my third baby, it is indeed a boy! As a mother of a new baby it was hard to not panic; I had a great aunt with MS and her quality of life was not great, but she was alive and doing well! I never prayed so hard for my mother to have MS in my life, or at all–who would do that? I knew ALS by the ice bucket challenge and that was it!

Wow it was quite the shock when I read on Google. The empathy I had for the people that lived with ALS was immense then it hit me, “my mom might have ALS.” It’s the year 2016, at this point my mother has lost a lot of her speech and starts noticing other parts of her body becoming stiff. June of 2016 is when she got the diagnosis.

I’ll never forget that phone call–the panic in her sober drunken voice. I asked her what I could do, and she said “Take care of me.” Without hesitation I told my husband I was moving back home and bringing the kids with me. I drove with three kids, across country to be the one–the person she needed me to be.

She declined quickly some time in year 2017 we got genetic testing done for her to see if for some reason it was genetic, turns out it was/is; c9orf72. My beautiful, bubbly, happy mother passed away on New Years of 2018. I suffered from depression, how can one live life without a mother? I felt so lost.

Fast forward I finally decided to get my genetic testing done recently, I too carry the c9orf72 gene. My wish and hope is to to as much as I can, while I am here for the people that suffer with ALS. To be their voice, hope, and light. Bless those who suffer and those who are affected by ALS, and of course keep the hope for that cure.

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