From the time of her very first smile, Erika Kate Maynard could light up a room with her joy.
She loved to swing in her backyard, and the colors pink and purple. She adored her sparkly pink flip-flops, the rock band U2 and goldfish crackers.
Erika Kate never knew how sick she was.
When she was just 3 ½ years old, doctors discovered a heart and lung problem called restrictive cardiomyopathy and secondary pulmonary hypertension. Her family’s world came crashing down around them.
The doctors gave Erika’s parents four choices for their critically ill little girl: do nothing and let nature take its course, seek palliative treatment to prolong her life as long as possible with limited medications, get aggressive with intravenous medications to help her lungs so she could get a heart transplant, or pursue a heart-lung transplant.
For the next 13 months, Rich and Traci Maynard sought the best-possible treatment for Erika Kate. Countless doctors and hospital stays later, the journey took them to a New York City hospital with a world-renowned specialist in treating children with Erika’s condition. The recommendation: that Erika undergo a heart transplant at Columbia University Medical Center.
After two weeks of waiting in the pediatric cardiac intensive care unit at Children’s Hospital of New York, a thousand miles from home, Erika got a heart.
But Erika’s body did not respond well to the transplant. She died on June 14, 2006.
From her diagnosis to her passing, and all the medications, doctor’s appointments and hospitalizations in between, the experience overwhelmed the Maynards. They endured a great deal of emotional, physical and financial stress. They were struck by the lack of resources available to help families cope with the difficulties of a situation like Erika’s.
Today, their daughter’s legacy is the Erika Kate Hope Alliance. She would be nine years old now.
The foundation has provided grants that cover short-term living expenses for more than 150 families nationwide. Care teams provide emotional and spiritual support for families who are receptive.
“To me, EKHA is about taking a heart-wrenching tragedy and turning it into something amazingly beautiful and meaningful,” Traci Maynard said. “It is about entering into the lives of those who are suffering, helping to bear their burden and offering them care and comfort. We want others to know they are not alone in their journey of pain, that we care for them and that God loves them, even though He has allowed this circumstance to unfold in their lives.”