Alexa was diagnosed with an interstitial lung disease at about 6 ½ years of age. Parents, Monica and Loren, noticed that when she was running around the house and wrestling with her dad, she seemed to be short of breath. They thought that maybe she had asthma, but that turned out not to be the case. After many lung biopsies, bronchoscopies, other respiratory tests, and blood work, Alexa was diagnosed with an interstitial lung disease which causes scarring of lung tissue and eventually affects one’s ability to breathe and get enough oxygen into the bloodstream. Interstitial lung diseases affect the tissue and space around the air sacks of the lungs. The cause of Alexa’s disease was never identified. As parents, Loren and Monica wondered how this could ever happen to their child.
The disease began to progress and at the age of 13 Alexa was placed on the pediatric transplant waiting list. In order to live, she needed a new set of healthy lungs. A transplant was the cure for her disease. No miracle drug needed to be discovered. No breakthrough medical procedure needed to be developed. Talented and gifted surgeons were in place.
Due to the seriousness of Alexa’s condition, she was placed at the top of the pediatric waiting list in the MN, ND and SD region known as LifeSource. She strived to live as normal a life as possible, but eventually she was unable to continue 8th grade. She required oxygen 24/7 and had to be fed through a tube because she did not have the energy to eat. Everything became an effort. Yet, Alexa and her parents had hope. They prayed that when another family lost a life, they would give a life. They prayed that when everything humanly and medically possible had been done for another child and all hope was lost, that family would give life by saying yes to organ donation.
On July 15, 2004 at the age of 14, Alexa died very suddenly at home and in the arms of her parents. The call that lungs had become available never came.