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Join us for another evening, of music, food, and fun. It’s sure to be the most fun you will have so far this year and it’s all for a wonderful cause!

Live Entertainment, Delicious Food and Beverages (heavy hors d'oeuvres, and a cash bar).

This year’s Soiree will be benefiting The Chromosome 18 Registry and Research Society. While we enjoy an evening of music, comradery, and fun we will be raising awareness and money for our mission of helping people with chromosome 18 abnormalities overcome the obstacles they face so they may lead happy, healthy, and productive lives.

The Chromosome 18 Registry & Research Society is an official 501(c)(3) nonprofit organization and the only research center in the world for chromosome 18 conditions, based at UT Health, San Antonio. They raise funds to develop treatment to improve the lives of individuals living with chromosome 18 conditions, which include many cognitive and physical impairments. They also offer social support and create a community for families affected by Chromosome 18 abnormalities.

Co-Host, Jamie Jackson, is a Chromosome 18 parent: Our Journey with Carter: A Story of Hope, Love, and Uncertainty.

In 2009, our son Carter was born seemingly healthy, with no indication that anything was wrong. My pregnancy had been smooth, and all prenatal tests came back normal. We were overjoyed to meet him, but just hours after his birth, a nurse came into the room with the unexpected news: "Something is wrong." This was the beginning of a journey that would turn our world upside down. Carter was quickly transferred to the PICU (Pediatric Intensive Care Unit), where the doctors ran a battery of tests. We were asked countless questions about our family history, our pregnancy, and any potential concerns. After four agonizing weeks, a geneticist called us with the results: our son had a rare genetic disorder involving his 18th chromosome. 

We were devastated, not knowing what this meant for his future. In our search for answers, we turned to Google. At that time, there was very little information about Carter’s condition. The first results that came up were related to Trisomy 18, a much more common but equally devastating diagnosis, with a prognosis of only a few weeks to live. We were heartbroken, fearing the worst. We gathered our family to visit Carter in the PICU and attend a meeting with the genetic doctor who would explain the findings. That’s when we learned that Carter had Tetrasomy 18p, a much rarer condition. The first question we asked was about his life expectancy. While the geneticist assured us that his condition didn’t impact his life expectancy, they also made it clear that very little was known about the disorder. In fact, fewer than 100 people in the world were diagnosed with it. We left that meeting with more questions than answers. 

Leaving the hospital, we felt overwhelmed. We were brand-new parents, suddenly tasked with caring for a child with a disability that no one understood. It was terrifying and isolating. But, from the very beginning, we made a commitment to give Carter the best life possible, no matter what that might look like. We didn’t know what to expect, but we knew we couldn’t do it alone. We started Carter in every therapy we could find: Occupational Therapy, Physical Therapy, Speech Therapy, and Feeding Therapy. Every day was a new challenge, but it was also an opportunity to learn. We became "Team Carter," and without this team of specialists, therapists, and caregivers, we wouldn’t have made it through that first year. 

Since then, many people have entered our lives at just the right moment, some staying and some moving on. Each person has played an invaluable role in Carter’s growth, and he continues to surprise us every day with his resilience and progress. Today, at 15 years old, Carter has been diagnosed with additional conditions, including Eosinophilic Esophagitis, which means he cannot eat food orally and is completely dependent on a feeding tube. He also struggles with a speech delay, but in our family, we’ve learned to understand his unique "language"— some words are clear, while others are more babble. Despite the challenges, Carter is the most social, loving, and innocent young man you could ever meet. He has a heart full of joy, and his ability to connect with others is remarkable. His life may not follow the traditional path, but he teaches us every day to find joy in the little things. 

While we have no idea what the future holds for Carter, we know one thing for certain: we will continue to support him and help him reach his fullest potential, whatever that may look like. We are raising funds for the Chromosome 18 Registry and Research Society, the only organization dedicated to researching genetic disorders related to the 18th chromosome, including Carter’s condition. This organization has already made remarkable progress. They’ve created a guiding document for families and doctors that explains what is known—and what is still unknown—about these rare genetic disorders. They have connected families like ours and provide ongoing support, which has been an invaluable resource for us over the years. The Chromosome 18 Registry is the reason we know as much as we do about Carter’s condition. They are constantly gathering data, making connections between families, and sharing insights that help us monitor Carter’s progress. Their work is crucial for families who find themselves in the same uncertain situation we were in. 

We are passionate about ensuring that future families don’t have to navigate this journey alone. By raising money for the Chromosome 18 Registry, we are supporting ongoing research that will help families like ours better understand and manage these conditions. We are also helping to build a community of support and knowledge, so no one must feel as isolated as we once did. Please Join Us Carter has shown us the beauty of life on his own terms. With your help, we can continue to support the work that is making a difference for families just like ours. Your donation, no matter the size, will go directly to research and initiatives that are changing lives. Thank you for being part of our journey, and for helping to create a brighter future for Carter and so many others.