COTA for Alicia B

Our Story

This is Alicia. She is 16 and JOYFUL! Alicia was born at just 24 weeks gestation. Being so premature, her lungs were severely underdeveloped and she has chronically struggled with fighting for air. Doctors have diagnosed her with End Stage Lung Disease. Alicia has been on oxygen since birth throughout her nights, but was switched to oxygen 24/7 in the 6th grade. She carries her lifeline around daily in the form of high flow oxygen. 

In addition to wearing her nasal cannula at all times to receive that oxygen, Alicia does rigorous treatments every day to keep her lung function at her best. Healthy lungs function around 100% – Alicia’s lung function is 20% on average, but during cold and flu season, she has dropped as low as 14%. At home, Alicia does treatments up to four times a day in the form of using cough assist machines, inhalation medications, and sleeping with a non-invasive vent every night. Her home based treatments can add up to 4-6 hours of her time each day. Alicia fights blood clots, and infections regularly. Sometimes that goes as far as Alicia even being hospitalized and put on a ventilator. 

Due to her poor lung function, Alicia’s body struggles to oxygenate her blood. That means that she cannot run, she cannot play sports, and even simple tasks such as getting from one class to another during passing period become quite difficult. She becomes cyanotic, light-headed, and flat out exhausted. AND, Alicia wants to go to school. She enjoys her friends and, while her lung function makes life much more difficult for her, she continues to press forward. Facing even this life-threatening disease, Alicia maintains a positive outlook on life and a joyful spirit.

Alicia’s case is unique. Her lungs have been sick for her whole life and they cannot get better. And while her lungs have not gotten drastically worse, the older she gets, the bigger she gets, the harder it is for her sick lungs to oxygenate her blood for her body, and cold and flu season become more and more dangerous for her. So, her amazing team of doctors through Children’s Mercy in Kansas City referred her to evaluation for transplant where she was added to the transplant list. Alicia is currently waiting for a double lung transplant that will take place at St. Louis Children’s Hospital. Alicia is getting new lungs!

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.

As you can imagine, the transplant procedure, recurring doctor visits, and lifelong medication will result in high ongoing medical costs. Alicia’s family will also have to temporarily relocate to be near the transplant hospital, incurring more costs associated with housing, travel and more. We sincerely appreciate your kind donations to COTA in honor of Alicia which assist with these very costs.