Each year the Euzkaldunak board considers candidates to be the primary recipient of funds raised during our annual charity fundraiser, the Sheepherders Ball. For 2025 the board has chosen Jamie VanOverbeke. Jamie is the son of Alyssa and Matt and brother of Brooks, a local Idaho family, who joyfully welcomed their newest addition to their family in July. Jamie was born only weight 5lbs and 11 oz but Alyssa and Matt were quickly able to bring Jamie home and were soaking in all the newborn snuggles and embracing life as a family of four. Amid the joy and love surrounding Jamie, Alyssa and Matt received unexpected news, one of Jamie’s newborn screenings flagged a rare set of genetic conditions. This marked the beginning of a month filled with tests, followed by more tests each one leading to more questions. Many of the doctors they encountered had never treated these conditions and were unsure of the next steps. After weeks of uncertainty, the diagnosis came, Jamie has a condition called Zellweger Spectrum Disorder.
If you haven’t heard of Zellweger Syndrome, it is an incredibly rare genetic condition, with only 1000 diagnosed cases worldwide. It’s caused by mutations in the genes that form peroxisomes, tiny structures in our cells that help break down toxins and fats. Zellweger impacts multiple organs, including the brain, liver, kidneys, and nervous system. Jamie is currently the only known child in Idaho with this diagnosis. In fact, Alyssa and Matt have spent much of their early medical appointments simply educating their care team, many of whom had never encountered Zellweger before. Understanding what the condition is and what it could mean for Jamie’s future is something that remains uncertain as of today. With this diagnosis comes not just heartbreak, it brings more tests, surgeries to help Jamie feel comfortable, hearing aids so he can hear his mom, dad, and brother’s voices, which, considering he is growing needs replaced every month, and ongoing doctor’s appointments to monitor his progression. Every step taken is to bring Jamie as much comfort as possible.
As if having a medically complex child isn’t challenging enough, navigating the healthcare system and daily life with a child who has extra needs brings its own set of burdens: copays, surgeries, missed work, full-time caregiving, specialized equipment, specialized formula, gas, babysitters, in-home nursing, the list goes on. No matter how well you prepare for life’s rainy days, nothing prepares you for something this earth-shattering.
Alyssa and Matt think about having Jamie experience life moments, as it’s so important to them that he have experiences in the world outside of hospital walls. This is something that is how much of this world can a parent show their child when time is of the essence. This would help them cover medical costs and Alyssa to be able to care for Jamie without having to worry about returning to work so they can make memories and give Matt, Alyssa, and Brooks the chance to fill Jamie’s days with as much life and love as possible without the added burden of financial worry.
