Abdeel's story is shared by his dad Andalibur.
First and foremost, we want people to know that Adbeel is a bright, resilient, and deeply loving boy who carries the heart of a true superhero. He loves racing around with Lightning McQueen and cheering for Spider-Man. Beyond his favorite characters, Adbeel is a little explorer—he finds immense joy in traveling, taking in the sights of mountains, lakes, and rushing waterfalls. While Leigh Syndrome is a part of our daily reality, it does not define who Adbeel is. He is defined by his sweet spirit, his determination, and the endless light he brings into our lives.
Adbeel was born in September 2021, healthy and full of life. Early on, around three months of age, we began noticing subtle health concerns as he experienced frequent bouts of diarrhea, colds, and fevers. The clearest sign that something was different appeared around June 2024, when an intermittent squint developed in his eyes. Over time, the squint became more pronounced and noticeable, prompting us to immediately seek answers from eye specialists and a pediatric neurologist.
After noticing the worsening squint, doctors performed a brain MRI, which revealed bilateral symmetrical hyperintensity in his brain—a distinct marker for metabolic brain conditions. We followed up with Whole Exome Sequencing (WES) genetic testing, which officially confirmed that Adbeel has Leigh Syndrome. Receiving a terminal diagnosis with no current cure is a moment that completely shatters your world. Reading about the harsh realities and life expectancy of Leigh Syndrome brought an overwhelming weight of grief that no parent is ever prepared to carry.
Adbeel finds so much happiness in simple and wondrous moments—playing with his Lightning McQueen and Spider-Man toys, going on travels to explore lakes, mountains, and waterfalls, and mastering new skills. Our family’s strength comes directly from Adbeel himself. Seeing his bravery, his tireless determination, and his joyful smile gives us the courage to keep moving forward, take nothing for granted, and focus on loving him completely every single day.
We hold so many incredible milestones close to our hearts, especially the moments where Adbeel showed us his unbelievable determination. Seeing him work through physical challenges and regain his footing was a moment of overwhelming gratitude for us. When we first bought him a tricycle, he couldn’t pedal it. But he kept trying until he finally figured it out, proudly shouting, “Momma look!” to show off his new skill. We bought him a trampoline, and at first, he couldn’t jump. Tirelessly, day after day, he tried until he mastered it. The pure joy in his voice as he called out, “Momma look! Baba look!” while bouncing is a memory that fills our hearts with pride.
Follow your child’s lead, celebrate every single victory—no matter how small—and never lose hope. The diagnosis is heavy, but do not let it rob you of the joy standing right in front of you today. Lean on your support systems, give yourself grace, and cherish every moment. You are not alone on this journey, and your child’s strength will guide you through even the darkest days.
