The Ortiz family has twin daughters, Eliana (“Eli”) and Emilia (“Emi”).
Knowing where and how to share our story is difficult...We never shared much publicly about Eli's condition...Everything started on a regular day when I put our 3 month-old twins down for a nap. After a few minutes, I saw Eli's chest heaving...I rushed over to her and found her largely unresponsive...After a rush to the emergency room, we learned she was in heart failure. Her heart was only vibrating...The doctors didn't know if she'd make it across town from Georgetown Hospital to Children's National Medical Center, which has more life-saving machines and medicines...
After the doctors at Children's National conducted many tests over the weeks that followed, Eli was diagnosed with dilated cardiomyopathy, which meant her heart was enlarged and not pumping sufficient blood to meet her body's needs. She had three open-heart surgeries, including one to attach a Berlin Heart and one to receive a heart transplant. Eli was the first child in the Washington, DC area to be on a Berlin Heart, which is a ventricular assist device (VAD) that pumps blood for the heart while a child awaits heart transplantation. She also had dozens of cardiac cathetarizations, was on dozens of medicines, and had dozens of hospitalizations...of up to 8 months at a time.
The Ortiz family is eternally grateful to the extraordinary team of medical professionals, therapists, social workers, case managers, Child Life specialists, volunteers, and others who gave Eli top-notch care and attention at Children's National Medical Center in Washington, DC. Eli spent the majority of her almost four years in the hospital, as both an in-patient and out-patient.
Eli, her sister, and her parents felt consistently loved and supported by the staff. Various staff members helped the whole family while Eli needed to be at the hospital for weeks and months at a time.
The Ortizes know first-hand what it means to be a caregiver of a child who has a complex medical condition: the painful, scary, and uncertain moments; the anxiety that comes from being stretched between multiple responsibilities and during intense times; the exhaustion of operating on little sleep; the need to find additional resources to help your children in all possible ways; the desperation of feeling you can't control circumstances or can't take away the pain, fear, or anguish your child is experiencing; and the recognition of how much stress impacts each family member in her/his own way...
The idea to support complementary care and Integrative Medicine (IM) originated from the Ortiz family's personal experiences; as well as their belief in the importance of holistic care that helps the body, mind, and spirit heal. They want to help reduce acute and chronic stress that can cause existing conditions to worsen and new conditions to form. They also believe in the potential of IM, as it "reaffirms the importance of the relationship between practitioner and patient, focuses on the whole person, is informed by evidence, and makes use of all appropriate therapeutic approaches, healthcare professionals and disciplines to achieve optimal health and healing." (Consortium of Academic Health Centers for Integrative Medicine)
Eli passed away March 28, 2016. Her light continues to shine and will always guide the Ortizes.
Click here to view a local news report on Eliana's Light and the 2017 Race for Every Child, an annual fundraising 5K that raises money for Children's National Medical Center. Team "Eliana's Light" is raising funds to support the development of an Integrative Medicine program at Children's National.
The Ortizes are tremendously grateful to the hundreds of people - family, friends, and hospital staff - who have cared for and supported them over the years. This organization started in recognition of their unwavering dedication, selfless service, and unconditional love.