Caring for a loved one with Amyotrophic Lateral Sclerosis (ALS) is a profound journey that encompasses physical, emotional, and financial challenges. Kelly’s story of unwavering dedication to her husband, Josh, offers a poignant glimpse into the realities many caregivers face. We usually write the stories ourselves, but the words Kelly shared in her application for grant funding through our Keeping Caregivers Close Program were felt so dearly by our Grants & Giving Committee that we thought it best to let Kelly’s words tell you her incredible journey as a devoted wife and mother, a tireless advocate for her husband Josh, and so much more.

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In her own words: Kelly’s Story

In December 2022, my world was turned upside down. That same week, we received two life-altering pieces of news. First, my husband Josh was told he likely had ALS. Then, we learned that we were expecting our third child. The joy of growing our family collided with the devastation of Josh’s diagnosis, casting a shadow over what should have been one of the happiest times of our lives. After months of testing at Northwestern, Rush, and Mayo Clinic, all three confirmed the diagnosis. ALS, they said. It is a cruel disease, with a 3-5 year prognosis. Our lives would never be the same.

The doctors told us to get on the FDA-approved drugs to delay death by a few months, apply for clinical trials, and “track the progression.” We were encouraged to live our lives and tackle our bucket lists while we could because the hope they offered was slim. But Josh and I weren’t ready to give up. We became relentless in our search for answers, researching every possible avenue for treatment. We fought for Josh’s health, moving beyond the typical ALS treatment plan.

In September 2023, we found out Josh had Lyme disease and co-infections that could be causing his neurological decline. For the past year, we’ve traveled all over Illinois and Wisconsin, pursuing out-of-the-box treatments, many of which aren’t covered by insurance. On top of that, we had to treat our home for mold toxicity, another potential factor in Josh’s health struggles. Since 2023, we’ve spent at least $35,000 on treatments in the hope of slowing down or halting the progression of his symptoms.

The emotional and financial burden has been immense. Josh works in construction, but as the disease progresses, his ability to do his job becomes less reliable. The twitching in his arms, chest, and back has led to severe muscle loss, and he’s lost most of the function in his hands and arms. Daily tasks that many of us take for granted are impossible for him without help. We can’t rely on his ability to work, and with three young children (ages 6, 4, and 1) and the constant demands of Josh’s medical care, I am unable to hold a full-time job.

Our days are a whirlwind of doctor’s appointments, treatments, and caring for our children. Every week, we travel to Chicago for ozone therapy and stem cell treatments, and every few weeks, we journey to Wisconsin for Lyme treatments. We are doing everything we can to give Josh the best chance at life, but we can’t do it alone.

Caregiving is more than a full-time job. It requires physical, emotional, and financial resilience, and at times, it feels overwhelming. As a caregiver, I pour everything I have into making sure Josh is cared for, our children are loved, and our family stays strong through these dark times. But now, I’m asking for help.

The Impact of Your Support

By supporting the Cocktails & Caregivers Foundation, you can help families like the Shaws get the support they desperately need. They are not giving up hope, and with our help, they have a little less financial burden as they keep fighting for more time, a cure, and a future where Josh is still here to see our children grow up.

Your generosity can make a world of difference. Together, we can help lighten the load and provide the care and support that Kelly, Mark, and their three young children need to allow them to focus on what truly matters. cocktailsandcaregivers.org/donate

Thank you for standing with us, and thank you for standing with caregivers everywhere.