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This is my ALS: A Love Story.  It’s about my blended family of six.

Jesse and I met on a blind date in February of 2017. We spent hours talking, laughing, sharing stories, and have spent very few days apart since that day. We were both single parents with two children of our own. During this time, we spent our days creating memories together and with our kids, summer days on the lake, pool days at our home, sports, family trips, and game nights at home. Jesse proposed in December of 2018, and we got married the following July in my parent’s backyard in Gig Harbor, Washington, where I was raised. That day was not only about our love and commitment to each other, but also about the love, connection, and commitment we made to our four children as well. 

We are a blended family of six. We share four children together, all of whom are our entire worlds. Our oldest, Taylor, is 14 years old. She is not only our very loved and precious daughter, she is also an ALS warrior and our family’s hero. Taylor has three younger brothers who are the center of her world: Jake (12), Hudson (10), Wesley (8). 

Taylor was misdiagnosed at 2 years old with Cerebral Palsy. After we noticed significant changes in her speech and mobility, we began to seek out answers as to what was causing these changes. Taylor was losing her strength and ability to walk, swallow and speak and we knew there was something else going on with her health. We spent several years in and out of appointments with no answer as to what may be the cause of her declining health. Finally, in 2018, after completing genetic testing, the results of that test confirmed that Taylor, who was only 9 years old at the time, had Juvenile ALS. 

The reality of ALS, whether it be as the patient, caregiver, or present family member, is incredibly challenging. However, from our personal experience, we also have seen that there is a silver lining to this diagnosis and the reality our family is facing. Many days may be filled with sadness, but many days are also spent seeing and feeling the true value of love, life, laughter, and living with gratitude, regardless of any life circumstance. We do our best as a family to focus on truly soaking in each memory and special moment we can all share together as a family. ALS may be incredibly challenging, but it has also helped our family view life in an entirely new way. A way that brings unique life perspective, hope, gratitude, and more joy for the little things in life, things me may have in the past taken for granted. 

-Maddie Futch

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