Macy Helm is an 18-year-old teen waiting on the transplant list for her 2nd kidney transplant. She was diagnosed with a rare kidney disease at the age of 3 called Focal Segmental Glomerulosclerosis (FSGS). FSGS is an aggressive and progressive disease that attacks the filtering units of the kidney. It often causes severe swelling, high blood pressure, high cholesterol, in Macy’s case blood clots and results in kidney failure up to 50% of the time. There is no known cause or FDA approved treatment for Macy’s form of FSGS.
For the first two years of Macy’s diagnosis, she was treated with high dose steroids, chemotherapy agents, immunosuppressive medications, and experimental therapies, none of which worked to keep her disease at bay. She was in and out of the hospital constantly and nearly lost her life several times. In less than 2 years, she started dialysis and at the age of 5 she received a living donor kidney transplant from a family friend, Miss Kathleen. Unfortunately, FSGS comes back to attack a transplanted kidney around 30-40% of the time and by the morning after her first transplant, the FSGS had returned. After 12 months of aggressive treatment, Macy finally achieved remission.
While her kidney transplant gave her new life, transplant is not a cure and Macy has since endured 40+ surgeries, hundreds of hospitalizations, and currently sees 8 specialists to manage her health. She has spent the past almost 13 years taking really good care of her kidney, but the average life span of a transplanted kidney is 8 to 12 years and her kidney has been through a lot, so it’s time for her to get a new kidney.
Macy is currently in End Stage Kidney Disease for the second time. We are working toward a pre-emptive living donor transplant to avoid going back on dialysis. Not only is dialysis extremely hard on the body, Macy has had a lot of lines and ports over the years and it is important to preserve the access she has left for later in life.
Our family has endured chronic kidney disease with daily interventions now for 15 years. It has been hard to go through kidney failure again, but we are determined to get her a new kidney so she can start her adult life strong!
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.