Elena is a sweet determined little girl, who brings a ray of sunshine everywhere she goes. Despite navigating ongoing medical challenges she lives each day with joy, curiosity, and celebration. Recently, we received a confirming diagnosis through the Undiagnosed Disease Program at the National Institutes of Health (NIH) that she has a rare genetic form of mitochondrial disease, for which she is the only documented patient. This affects Elena’s growth, metabolism, development, energy and also causes many secondary conditions which affect her health.

Thanks to advanced diagnostics, modern medicine, and a massive team of clinical specialists Elena has created her own “normal” despite her complex medical needs.  Her diagnosis has provided critical information to tailor medications, supplements, interventions and target areas of her health that need monitoring. She will continue to “write her own story” and with each new step we will continue to do our best to keep her as healthy as possible and prepare for any health challenges ahead.

As Elena’s disease continues to progress, the most immediate needs are a new kidney and potentially a new liver. We hope this kidney transplant will help ease some of the difficulties she has experienced since birth as well as improve her overall health. Elena is resilient to say the least, her courage through hundreds of doctor visits, blood draws, tests, hospitalizations, surgeries and daily interventions at home are extraordinary. No doubt she’s a real-life super-hero!

Her medical journey has been an intense constant evolution and we are thankful for the support from family and friends during this time. We know many of you would like to be kept updated, you can follow her Facebook/Instagram accounts as well as updates on this website. If able, please consider donating to COTA in honor of Elena. 100% of your donation goes towards transplant-related expenses.  The Willardson family is immensely grateful to their army of family and friends for the outpouring of love and continuous support!

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.