<div><strong>A Bad Time, But a Really Good Story</strong>
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<div>“We have bad times, but good stories.”
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<div>These poignant and highly accurate words are a direct quote from 20-year-old Giacomo, or simply, “G,” as he’s more famously known, and perfectly sum up his life with his mom, Liz, and three siblings, Isadora, Lukas, and Gianna. And now, as G is facing the end of his time here on earth, he’s looking to fill his last days by making some final good stories during what has rapidly and unexpectedly become a very bad time.
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<div>This all started when G was two, and Liz first started noticing differences in his development and intuitively knew something was wrong. She spent 4.5 years seeking help, arranged countless appointments and tests, endured medical abrasion from providers who told her she was crazy, Giacomo would “outgrow” the delays and behaviors, and encountered several misdiagnoses along the way. Finally, during her last pregnancy, she reached out to a neurologist in a last-ditch effort for answers.
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<div>And she got them.
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<div>Giacomo was diagnosed with a rare genetic condition called myotonic dystrophy. This incurable degenerative neurological disorder affects virtually every organ system in the body, leading to physical and cognitive impairments and often a shorter life expectancy, especially in cases like G, where symptoms begin earlier in life.
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<div>But it didn’t stop with G…two months later, just as Liz was welcoming a new baby, she was also welcoming the same fateful diagnosis for her other two children, Lukas and Gianna, as well as baby Isadora. As life became permanently altered and the reality of this diagnosis began to set in, Liz vowed to herself and her children that she would do anything she could to help them see as much of the world as possible and to experience as much life as they could squeeze into whatever time they were given. This meant altering her work life, making sacrifices, getting creative, and fostering a sense of adventure rooted in togetherness and the art of finding happiness with simple joys and big journeys alike.
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<div>In mid-October, only two days after returning from the latest of one of their family adventures, G very suddenly became ill and ended up in the hospital with a digestive system that was clearly disrupted. Very soon after, it became apparent that his disease was rearing its ugly head, and his whole gastrointestinal system was shutting down. This was particularly difficult, as his beloved sister and best friend, Gianna, had experienced a very similar tragedy two years prior, starting in November of 2022. In an experience that can only be described as a beautiful tragedy, Gianna ultimately left her earthly body on March 17, 2023, after enduring months of pain, tests, procedures, and medical interventions in the hospital ICU. (Check out her obituary <a href="https://epilogg.com/obituary/gianna-rose-lilly-naylor-8415" target="_blank" rel="noreferrer noopener">here</a>, if you’re so inclined.)
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<div>Having witnessed Gianna’s courageous but painful end of her life and being wise beyond his years, Giacomo has decided that he wants something different. Instead of landing in a hospital bed and enduring inevitable discomfort, he is trading the undesirable side effects of high-tech medical interventions for the freedom to choose how he spends his final days. Much like his sister, G is a true warrior, but he is opting to end his battle in a different way, in a final heroic effort we’re calling, “G’s Last Stand.” However, this historical war tale will not be fought on a battlefield. Instead, Liz plans to pack up her ’95 teal conversion van, Fortuna, along with Giacomo, Lukas, Isadora, and Gianna-on-a-stick (the life-size beautiful face memorial that keeps her spirit alive and part of all the family fun) and hit the highway for what is likely to become the most epic road trip imaginable. G is compiling a list of places he wants to visit, people he wants to see, and things he wants to do. They're going to create as many more memories as possible throughout whatever time he’s got left, see as many haunted sites and Lego establishments as they can, eat whatever little bits of pleasurable food G can handle and help him spend the rest of his life….LIVING.
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<div>While G can’t change his fate, he can change the path to getting there—and he’s looking for you to help him and his family as they navigate his final days and prepare for his transition. Please consider giving anything you can to contribute to “G’s Last Stand,” and stay tuned as they take all their supporters along for the ride while G turns this final bad time of his life into one incredible story!!
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