Loretta: A Tale of a Rare Terminal Lung Disease

Hello, I’m Linda Carlson Kowalski, I am raising funds for my Daughter Loretta Kowalski Carlson. In April 2022, she was diagnosed with a very rare, progressive, terminal Lung Disease, Idiopathic Pulmonary Hemosiderosis (IPH). She is one of 43 people in the country to be diagnosed with this lung disease and only 200 Worldwide. It took two years to get this diagnosis that changed the course of her life before her eyes forever.

IPH is a rare disease, characterized by diffuse alveolar hemorrhage (bleeding into the lungs), which leads to multiple respiratory complications and permanent lung damage. It is mostly diagnosed in male children. She is on oxygen 24 hours a day and on a ventilator at night.

Loretta is a gem and a rarity. It is the rarity that has now confined her to a wheelchair.

The funds raised will assist in the purchase of a wheelchair-accessible vehicle and home modifications to help her keep as much independence as possible. Also, soon Loretta will be tested for a Lung Transplant at St Joseph’s Hospital in Phoenix, AZ. There will be expenses for lodging for two weeks.

Although the diagnosis of IPH took two years to come to this terminal disease, it was at that point we both came to the realization she would no longer be able to pursue her career as a High school and Middle School Chemistry/Science Teacher, her true passion. She also enjoyed going to Karaoke and singing her heart out.

She has earned her degree as a Certified Chemist and completed the requirements to inspire and teach Middle School and High School students her wealth of knowledge. She is a natural-born teacher and teaching is her passion. At only 4’ 10” in height, she reached the hearts and minds of the students as a Student Instructor in Chemistry at Northern Arizona University, Student teaching at James Monroe Middle School and Volcano Vista High School.

Her treatment team consists of an Interstitial Lung Disease Specialist, Cardiologist, Rheumatology, Psychiatrist and Behavioral Therapist. It is this team that helps Loretta heighten her quality of life for which we are extremely grateful.

It is frightening and humbling to ask anyone for help; however, we have reached that point. We are trying to raise funds for home modifications; ramps, lower kitchen counters, and widen doorways to accommodate her wheelchair, which she named her “Chariot” and a wheelchair-accessible vehicle.

Through these devasting changes, Loretta has not lost her sense of humor and positive outlook. Our goal is for her to live her best life with the remaining time she has been gifted. Any help that you can provide would be greatly appreciated.