COTA for Eliana

Our Story

In May 2019, Eliana, 5 years old, had just finished Kindergarten. We were treating her for allergies because her eyes were unusually puffy. When this continued she was seen by her doctor and diagnosed with Nephrotic Syndrome. Days later she was treated for possible Minimal Change Disease, one form of NS. Within 3 weeks of this diagnosis she was admitted to Children’s Hospital of Atlanta (CHOA) for the 1st time due to the severe swelling, which cannot be treated with a simple diuretic. The edema in Eliana’s body had increased to a point where it was uncomfortable to walk around. The CHOA team treated her edema with IV infusions of albumin (protein) followed by Lasix (diuretic). This can only be done in the hospital through hours each day of IV therapy. By week 4 the doctors felt it necessary to biopsy her kidneys. The biopsy resulted in a diagnosis of Focal Segmental Glomerulosclerosis (FSGS), a chronic kidney disease that frequently results in transplant, and has a high chance of recurrence in the new kidney. We researched and tried everything we could find to stop or slow the deterioration of her kidneys; however, Eliana continued to spill protein from her kidneys. From the time of her initial diagnosis to the final progression of her kidney disease leading to end stage renal failure, Eliana had been admitted to CHOA for infusions a countless number of times. While the timing varied between each admission, the average was typically 7 days out, 5 days in. The edema upon check in was typically 20% of her “dry” body weight. In perspective, this was similar to going through a 9 month pregnancy every 7 days. In August 2020, Eliana began peritoneal dialysis, which included an operation to place a catheter in her belly, and nightly dialysis. This, at least, allowed her to be home and remain at a consistent weight with very minimal edema, but most of all this allowed her a mental refresh from the anguish of the hospital visits and IVs.

As of today, May 2021, Eliana (7 years old) is waiting on a transplant, and hoping it will be from one of her parents (currently in the work-up process). With her 4-year-old brother as her sidekick, she approaches each day with playtime and giggles. She continues to be a strong hearted young girl who dislikes going to school and doing homework, and would rather build blanket forts or play pranks on family members. She still endures many needle pokes, a very limited diet, and daily dialysis, but she is incredibly strong and an inspiration to all who know her.

We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider donating to COTA for Eliana.

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.