At 3 months old Olivia was diagnosed with Polycystic Kidney disease (PKD).  We treated the symptoms of that disease (hypertension) and monitored her heart to ensure it was working properly.  At 18 months old, Olivia had a seizure at her daycare.  We rushed her to a local hospital where they performed a CT scan of her brain, and she was then transferred to the University of Iowa Children’s Hospital in Iowa City, Iowa for further evaluation.  Olivia was diagnosed with Tuberous Sclerosis Complex (TSC).

TSC is a genetic disorder characterized by the growth of numerous noncancerous (benign) tumors in many parts of the body. These tumors can occur in the skin, brain, kidneys, and other organs.  TSC often affects the brain, causing seizures, developmental problems, and behavioral issues which are many of the characteristic features of autism.

Kidney tumors are common in people with Tuberous Sclerosis Complex; these growths can cause severe problems with kidney function and may end up being life-threatening.

Olivia is 12 years old and due to the PKD and kidney tumors, her renal function is now less than 20%.  She is in need of a kidney transplant.

She will most likely also need at least 1 additional kidney transplant in her lifetime.

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.