My Story

I was 6 when my mother got PAP

Moritz was only 6 years old, when his mother was diagnosed with pulmonary alveolar proteinosis (PAP). Having a mother who was in and out of hospitals affected him in many ways. Today, Moritz is 17. This is his story. 

When Moritz was 6 years old, his mother was diagnosed with PAP. He does not remember her getting the actual diagnosis, but he recalls the sudden change in his family’s everyday life.

“I cannot remember my reaction in connection with the actual diagnosis. But I remember that the disease influenced my everyday life a lot in the following years. I was often sad and felt depressed because my mother was either in the hospital or very weak at home.”

Mom couldn’t play

To the little boy, it was hard having a mother who couldn’t really be present for a long period of time. Moritz remembers feeling sorry for his mother. He knew that she felt bad about not being able to be the mother she had planned to be. But neither she nor Moritz could do anything about it.

“The worst thing was that I didn’t understand the disease and why it made my mother feel so bad. But PAP had a huge influence on my everyday life. The first thing I noticed was that my mom was less active. We couldn’t go swimming anymore – which was something we had always loved doing together. We couldn’t play catch and run. And we couldn’t go on active vacations and do sportive activities like we used to. So my father and I went on vacation on our own.”

Oxygen moved into our home

Another thing which Moritz remembers clearly is when his mother started needing oxygen to be able to breathe:

“I remember this huge oxygen tank moving into our home along with a long tube that transported the oxygen to my mother’s nose. Eventually, I got used to it, but I remember that my friends had to get used to it, too.”

Never lose hope

Today, Moritz’ mother’s condition has improved. It took years of different treatments and an ever present hope for recovery, and finally, the doctors found a medication that now helps Moritz’s mother maintain a somewhat stable life.

“If I were to give two pieces of advice to other PAP relatives, it would be never to pity the patient – it will just make it even harder for him or her – and never to lose hope for recovery.”


Read how Elisabeth handled it when her 11-year-old daughter got PAP
Read how you can help as a relative

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