Taosies was born in January 2010 with Critical Congenital Heart Disease. His anatomical diagnosis is Double Inlet Left Ventricle (DILV) with Transposition of the Great Arteries (TGA), also known as single ventricle anatomy or “half a heart.” There is no repair available for his anatomy, only palliative surgeries to make the most of what his heart offers. Eventually Taosies will need a heart transplant, but as cardiac science advances, his family and care teams are hopeful he will reach adulthood before this is necessary.
Taosies underwent open-heart surgeries at 14 months, 4 ½ years, and 5 ¾ years old. In addition, he has also had several cardiac catheterizations, more than he or his parents want to count. Considering his anatomy, Taosies is fortunate to have only spent a total of 2 months and 3 weeks living in a hospital. During those inpatient days, he amassed quite the collection of Lego kits and Star Wars books!
Because of his critical heart disease, Taosies also experiences neurodevelopmental, educational, and psychological challenges. Thanks to the multi-disciplinary approach of his care team, which spans the country and three treatment centers, Taosies continues to receive appropriate therapy in these areas. His family couldn’t manage without the support of and specialized treatment from Children’s Heart Center of Nevada, The Heart Institute at Children’s Hospital Los Angeles, and The Single Ventricle Survivorship Program at Children’s Hospital of Philadelphia!
In his role as a Junior Advocate with CCHD, Taosies has attended the Congenital Heart Legislative Conference in Washington D.C. and raised over $2,500 for programming across the United States. He will stop anything to make a funny video or draw a rainbow card for a friend in the hospital, and recently started mentoring a younger CHD patient. Taosies spreads his message of kindness to all who will receive it, and combined with his super smile, he is unstoppable. Like he often says, “I am just a regular person that happens to have a sick heart.”
Taosies is a Junior Master Lego Builder, artist, and newly minted flag football player. He can outswim most friends at the neighborhood pool and has never ever met a stranger. He lives in Southern Nevada with his parents and older brother, who is also a CHD warrior. Check out Artyom’s story here.
Read other features about Taosies and his family:
Always Enough – November 2018
9 Things I’ve Found Helpful as a Heart Dad – July 2018 – Featured on The Mighty
Beyond the Heart – April 2018