Our Story
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 catheterizations, was on dozens of medicines, and had dozens of hospitalizations of up to 8 months at a time.
While Eli spent the majority of her almost four years in the hospital, as both an inpatient and outpatient, we did everything we could to give her joy, happiness, and fulfillment. When she was able to be at home and was feeling well, we took our girls to library story times, the playground, birthday parties, our family members' houses, and more. We got to see them play in the sand, kick soccer balls, twirl in tutus, dance to "Frozen" songs, and start pre-school. Every moment was precious and we hold onto all of them dearly.
Eli passed away March 28, 2016. Her light continues to shine and will always guide us.
In her honor, we began Eliana’s Light. We understand what it means to be a caregiver of a child who has a serious illness. We know how painful and scary uncertain moments can be. We have experienced the anxiety that comes from being stretched between multiple responsibilities during intense times. We know what it’s like to operate on little sleep and exhaustion. We know how it feels when you desperately want to take away the pain, fear, or anguish your child is experiencing; and how their state of being impacts each family member in her/his own way.
And so, we created Eliana’s Light to help parents, like us, find additional resources to help their children in every way possible. Grounded in our belief in the importance of a whole health, holistic approach to care, we strive to help you and your family feel better.
With love,
Whitney Ortiz, Founder and President of Eliana's Light
Click here to view a local news report about Eli's experience getting a Berlin Heart.
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" raises funds each year to support the development of an Integrative Medicine program at Children's National.
Click here to read a piece on Eli and the Berlin Heart in a 2014 edition of Advancing Pediatrics.
“I support this extraordinary initiative from patients to patients raising awareness in the physician and other medical providers on the importance of the Integrative Medicine approaches to heal our patients. Eliana’s story is an inspiration to all caregivers and health care providers.”
“This little light of mine, I’m gonna let it shine. Oh, this little light of mine, I’m gonna let it shine. Let it shine, let it shine, let it shine!”