Luis is a sweet, strong little boy who brings so much love and light to everyone around him. He is funny, adorable, and full of wonder. He can get grumpy but never mean, and when he’s hangry, he’s a force of nature! He is so curious, so observant, everything about him is a blessing. His life is a miracle, and he is loved more than words could ever express.
On January 19, at just 15 months old, our lives changed overnight. We noticed he wasn’t acting like himself, so we took him to the hospital. What we thought might be something minor quickly became every parent’s worst nightmare; Luis was in heart failure. He had to be airlifted from Tucson Medical Center to Banner University Medical Center, where doctors worked urgently to save his life.
After hours of evaluation, the medical team made the critical decision to place him on ECMO—the highest level of life support, a machine that takes over the work of the heart and lungs. Shortly after, he was transferred to Phoenix Children’s Hospital, where Luis continues to fight every single day.
Following extensive testing, he was diagnosed with Barth syndrome, a rare genetic condition that weakens and enlarges the heart and causes muscle weakness over time. There is currently only one approved medication for this condition, and treatment options remain extremely limited.
After nearly three weeks on ECMO, Luis underwent open-heart surgery to place a ventricular assist device (VAD) to help his heart pump. While the surgery was successful, his journey was far from over. The right side of his heart began to fail as well. He was rushed back into surgery for a second procedure. By the grace of God, that surgery was also successful.
Today, Luis is being supported by a BiVAD, which is helping both sides of his heart function as he waits for a life-saving heart transplant.
We are incredibly grateful for the doctors, nurses, and everyone who has played a role in keeping him alive. Their dedication has given Luis a fighting chance. But the road ahead is long and uncertain, and it comes with overwhelming emotional and financial challenges.
We are asking for your support—whether through donations to COTA for Luis’ Heart, prayers, or simply sharing Luis’s story. Every act of kindness, no matter how small, brings us one step closer to giving him the chance at the life he deserves.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.