Our dear friends are facing the unimaginable loss of their beloved 5-year-old son, Justin, who tragically passed away after a courageous battle with Clarkson’s disease, also known as idiopathic systemic capillary leak syndrome (SCLS). Because Clarkson’s disease is so incredibly rare, with only around 500 cases reported worldwide, identifying and treating it can be extremely challenging. Justin’s illness progressed with heartbreaking speed, and within just a matter of days, his family went from searching for answers to saying goodbye to their precious little boy.

Justin was a sweet and loving little boy who brought joy to everyone around him. He loved Pokémon, dinosaurs, and sharks. He had a contagious smile, and filled every room with his laughter and endless energy. Some of his happiest moments were spent playing with his siblings and cousins, creating memories that his family will cherish forever. He was deeply loved by his family and friends, and his absence leaves a lasting void in the hearts of all who knew him.

In the days leading up to his passing, Justin fought bravely in the Pediatric Intensive Care Unit (PICU), surrounded by his family’s love and his medical team who did everything they could to save him. His parents never left his side as they held onto hope and prayed for a miracle. Despite every effort, Justin’s family faced the unimaginable heartbreak of losing their precious son — a loss no parent should ever have to endure.

As Justin’s parents, Terese and Tony, and his two sisters navigate this devastating loss, we hope to surround their family with love and support while helping ease some of the financial burden they now face. Funds raised will help cover funeral and memorial expenses, as well as the medical bills accumulated during Justin’s stay at the hospital.

Any contribution, no matter the amount, will provide meaningful support to Justin’s family during this heartbreaking time. If you are unable to donate, sharing this fundraiser and keeping Justin and his family in your thoughts and prayers would mean so much.

Thank you for your kindness, generosity, and support as we come together to honor Justin’s memory. We will forever remember the joy, laughter, love, and light he brought into the lives of everyone who knew him during his five beautiful years.