We are the Ham Family!

Our story of the Angelia (Glenn) and Eric Ham Family children began with the birth of our oldest child, Kenny, in 1995. Kenny was born with a cleft lip and palate, and from birth needed to undergo several surgeries and medical treatments. Little did we know, in addition, Kenny also had a rare genetic disorder called Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC).

ARVC is a rare genetic condition that infiltrates ventricle muscle tissue with fatty scar tissue, affecting the heart’s electrical signals, and causing abnormal heart rhythms. In 2010, this condition led to Kenny’s sudden cardiac death at the age of 14. This devastating loss was our family’s catastrophic introduction to the realities of ARVC.  

At the time of Kenny’s death, Kya was six years old and Eli was four years old. Like his big brother, Eli was also born with a cleft lip and palate which has required approximately 15 surgeries to repair. Our lives quickly became a regular journey of navigating ARVC’s impact on our lives, intertwined with doctor appointments, hospital visits, and medical treatments.

In 2015, at the ages of 9 and 11, both Eli and Kya were diagnosed with ARVC. As recommended by our local providers, we traveled out of state to seek care from ARVC specialists. Despite implementing the recommended activity changes and medications, the disease progressed with Kya receiving her implantable cardioverter defibrillator (ICD) at age 14, and Eli receiving his ICD at age 13. In 2023, ARVC reached critical stages. At age 17, Eli was evaluated and placed on the heart transplant list. Kya, at age 20, received inpatient treatment for cardiac stabilization and continues working through key health issues for the possibility of transplant consideration.   

During this time, Kya (20 years) and Eli (18 years) continue to live their lives to the fullest extent possible. Kya is empathic, caring, and loyal. She attends college part-time and studies Social Work (much like her mom). She enjoys music, photography, sketching; all things creative. Eli is a full-time college student and studies business (much like his dad). He is an adventurous and humorous spirit, enjoying time with friends and creating memories.

It’s impossible to briefly explain all the various elements of ARVC and heart transplant, but we know that ARVC will result in death for Kya and Eli. We know that heart transplant is not a cure and a new heart does not last forever; It exchanges one set of symptoms and problems for another. A heart transplant, if possible, is the only treatment and hope for extending their lives beyond the effects of ARVC.

With a deeper understanding of the journey ahead, we acknowledge that we cannot do this alone. As their parents, we are committed to ensuring Kya and Eli receive the medical care they need, both now and throughout their lifetime, which led us to work with the Children’s Organization Transplant Association (COTA). The fundraising goal indicated on our page (currently $150,000) is the estimated amount of heart transplant-related expenses Kya and Eli will encounter in their lifetime ahead should everything go according to the ideal plan. All funds raised through COTA are exclusively used for heart-transplant-related care by our family and families like ours.

We would love for you to follow our journey on this page and join us in this effort to any extent possible. Your care and compassion have been essential to our healing and strength over many years and we continue to cherish it. Thank you for showing up for us!

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.