COTA for Team Alessandra

Our Story

Alessandra (Ali) is a spirited 12-year-old girl who loves adventure (traveling, camping, and being crazy with her friends) and is also experiencing advanced heart failure requiring a heart transplant.

Ali was born with a condition called heterotaxy syndrome, which caused her organs to develop atypically, most critically her heart. Ali has a single-ventricle heart that is on the right side of her chest and pointed to the right (dextrocardia). She was also born with malrotated intestines, midline liver, and absence of a spleen. An early record of the start of her journey (from the time of prenatal diagnosis) can be found here.

In Ali’s life, she has had three heart surgeries at Phoenix Children’s Hospital and has lived with a Fontan physiology for nearly her entire life. Even though that comes with limitations, Ali is a child who prioritizes fun over discomfort. For many years, she thrived in her condition. She went to school, had regular sleepovers with friends, played sports, traveled (her favorite place in the world is Manhattan, New York!)

About two years ago, her body began to struggle with Protein-Losing Enteropathy (PLE). When this condition was no longer manageable, we traveled to the Children’s Hospital of Philadelphia for lymphatic surgery. PLE was a rough battle, and just as it became well-managed, she caught a virus that sent her straight into heart failure with less than 30% function.

Ali has been receiving inpatient care at Phoenix Children’s Hospital since January and is at the highest priority on the transplant list. As scary as this reality is, Ali has a special ability to find fun in anything, staying motivated and optimistic each day.

We’ve partnered with the Children’s Organ Transplant Association (COTA) to help raise funds for transplant-related expenses. COTA’s support will be available for a lifetime, should Ali need another transplant in the future. Donations are tax-deductible to the fullest extent allowed by law, and COTA does not take any fees from the funds raised. 100% of the donations will go directly toward covering a lifetime of transplant-related expenses. While our medical insurance covers the transplant surgery, there are many additional costs that are not covered.

We have been incredibly blessed by the outpouring of love and support from our family, friends, and work family. Thank you for taking the time to read Ali’s story and for being a part of her journey! We will be providing updates, so feel free to check in periodically.

“A heart transplant is not just a medical procedure; it’s a journey of the soul, a second chance at life.” — Unknown