COTA for Team Lindsey

Our Story

To view Lindsey’s video, click here.

Lindsey Cooper was born seemingly healthy, but at 9 months old, her health began to sharply decline. She was unable to grow and failed to thrive. After hundreds of tests, Lindsey was finally diagnosed with ornithine transcarbamylase deficiency (OTC), a rare X-linked genetic disorder, at 14 months. OTC patients are unable to produce an enzyme in the liver leading to a buildup of ammonia, a toxic chemical in the brain. A buildup of ammonia is called a hyperammonemic crisis, producing a range of symptoms including delirium, reduced consciousness, headaches, vomiting, seizures, coma, or even death. Lindsey had to limit her protein intake dramatically as well as take many medications. 

Lindsey’s crises usually required a couple of weeks in the hospital at a time. Since beginning high school five years ago, the number and severity of them increased exponentially. When Lindsey must begin using her own health insurance, it was virtually impossible that it will cover her life-saving medications. Lindsey’s diagnosis has also affected aspects of her social life. She was often unable to go out with friends or go on school trips because of the unknown timing for a crisis to occur. 

Despite living with a fatal disease all of her life, Lindsey has done everything in her power to make the most of her childhood. She danced and figure skated competitively for over a decade, excelled in school – graduating top of her class, and enjoyed volunteering with her youth group. She will be attending Indiana University as a biochemistry major in hopes of a career in medication design. Unfortunately, Lindsey could not live away from home without a transplant because, during a hyperammonemic crisis, Lindsey is completely unaware of what is happening and therefore could not communicate the need to get to the hospital.

Lindsey had two dry runs, meaning that Lindsey was admitted and prepped for surgery only to find out the livers were not of good quality, so the surgery would not occur that day. Luckily, third time’s the charm and Lindsey finally received her transplant on January 12th, 2021. She is very excited to live a “normal” life and make her contribution to the future of medicine.

As you can imagine, the transplant procedure, recurring doctor visits, and lifelong medication will result in high ongoing medical costs. The recovery from a liver transplant takes at least a year, as well as the need to stay close to the hospital, which is 300 miles from home, for the first three months. We sincerely appreciate your kind donations to COTA in honor of Lindsey, your prayers for a successful procedure and speedy recovery, and your continued support for her recovery and the great plans God has in store for her.

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.