A family’s experience with ALS, and how you can help at year-end.

“A week before my 28th birthday, I was diagnosed with ALS.” – Kari Robben

My husband, Andy, and I spent our 20s growing our careers and our family — three children under the age of four. Andy was a firefighter and EMT. I was teaching kindergarten in Dayton, and then English as a Second Language in Hamilton City Schools. We spent time outdoors hiking, climbing, and biking. And then one day our lives turned upside down.

In 2014 when I was pregnant with my youngest, I noticed weakness in my hands, some muscle twitching, and cramps. My OB believed it was pregnancy-related. My son was born in July, but the symptoms remained. I remember telling Andy that I didn’t feel as “in control” of my body as I used to.

Later that August I was nursing my son in the middle of the night while scrolling online. The Ice Bucket Challenge had just gone viral and I came across an article by Pete Frates, one of the founders of the Challenge. I woke up Andy, crying hysterically, because I was sure that I had ALS. My symptoms matched Pete’s exactly.

My family physician brushed off my concerns, saying that “everyone” thinks they have ALS because of the viral Challenge. She told me it was likely related to fatigue and breastfeeding, and to drink more water.

Nothing changed.

The next several months were frustrating and frightening. I saw an occupational therapist, a hand therapist, and a neurologist. Still, no concerns of ALS. My EMG was supposedly normal, and my symptoms were not what they thought ALS should look like: I was young. I was active. I was female.

But I was also persistent. I knew something was wrong, and needed answers. In January of 2015 the Mayo Clinic confirmed my worst fears: A week before my 28th birthday, I was diagnosed with ALS.

That’s when our world fell apart. As much as we needed to learn what was wrong, the answer left us devastated. Andy tried his best to hide his panic, but he didn’t know how he would keep our family afloat financially through what was ahead. He envisioned having to leave his job to care for three young children and a wife in a wheelchair.

The first six months were terrifying for us both, and the first three years carried so much loss. I was denied for both retirement and disability because I hadn’t worked long enough before I got sick. We lost our house, we lost our jobs, and I was losing physical abilities — and we were still in our 20s.

It felt like the puzzle pieces of our lives suddenly fell to the floor — each one out of reach.

But Andy was my constant cheerleader and showed confidence through every trial. Our families, and Andy’s “fire family,” rallied around us.

Then, sometime in that fourth year after diagnosis, something clicked for us. I’m still here. I’m still walking and talking, just more slowly and differently. Thankfully, my ALS progression is slow — a rare thing. Why were we living our lives in darkness when our young children needed us to be light in their lives?

We stopped the pity party, and began living for today.

That change in perspective helped us see that ALS has also brought with it some unexpected blessings. Before ALS, Andy and I were workaholics. Our first vacation together wasn’t until after my diagnosis. We’re trying to do more as a family now. I still teach by home-schooling our kids — Ella (15), Sofia (13), and Emmett (11). Their experiences helping me each day are shaping their own independence, values, and outlook on life.

Another blessing through all of this has been ALS United Ohio. In fact, I called ALS United Ohio the day after I received my diagnosis 10 years ago, and they have been there for us every step of the way.

My care coordinator, Pinky, continues to be a lifeline for me. If she doesn’t have something I need, she finds out how to get it. They share expertise and resources through programs like the ALS Symposium, Education & Exchange sessions, and more.

The annual $1,200 Quality of Life Reimbursement Grant is also a huge blessing each year. It has covered the cost to replace our kitchen stove with one that has controls on the front for my safety. It’s paid for a handicapped bike so that I can continue to enjoy the outdoors with my kids. It’s paid for the watch I wear that has fall alerts. And it’s covered the costs of so many of my doctors’ appointments which I would have otherwise skipped due to the expense.

Andy works hard to help us make ends meet. He is a full-time firefighter with the Evendale Fire Department, works part-time on the Harrison Department, and picks up extra shifts whenever he can. He also teaches fire and EMS at Cincinnati State University, cuts grass, and helps a friend install chimneys. But with ALS, it’s still not enough. ALS United Ohio’s support fills the gaps, giving us security and a more normal family life — a huge relief so that I don’t feel like a financial burden to my family.

And ALS United Ohio makes sure that we never feel like we’re in this alone.