In March of 2018, Jayden was diagnosed with nepherotic syndrome. There are two variances of this: one is called “minimal change,” which is the most common form of this disease and children oftentimes go on a heavy round of steroids, go in remission and never have trouble again. After trying the steroids and finding his body was completely resistant to the steroids, his doctors said it might be the second variance of this called FSGS; this is very rare, but after a kidney biopsy we discovered that FSGS is the variance he had. There is no growing out of this form. With this new information, we tried every treatment available to us, but none of them put him remission and his kidneys began to fail. The doctor told us he needs a transplant and will need several throughout his lifetime — one every 10-15 years because the FSGS variance of the nepherotic syndrome is in his blood so once we have the transplant the disease will come back, but is often easier to treat. The catch is the medicine needed to treat it and the medicine he will be on to prevent rejection of the kidney will basically cause the new one to fail.

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.