Jocelyn Meggenhofen: Living With Alexander's Disease

By: Sasha Boudtchenko

Jocelyn Renee Meggenhofen was born with a disease that is as rare to get as getting struck by lighting — a form of Leukodystrophy called Alexander’s Disease. It was following the two seizures she suffered at the age of three that she was diagnosed with this degenerative illness, which eventually leads to a loss of motor skills such as walking and eating.

Despite the early diagnosis, it was not until ten years later that serious symptoms began to surface, beginning with a struggle over muscle control and coordination. In the following years, Jocelyn visited Riley Hospital for Children more often due to respiratory problems brought on by recurrent pneumonia, eventually resulting in the terrifying event of both of her lungs collapsing. Fortunately, Jocelyn recovered and her lungs healed enough for her to be discharged six weeks later.

However, the respiratory issues kept bringing Jocelyn back to Riley Hospital for Children, where the staff got to know her, support her and her family which ultimately slowed down Jocelyn’s number of hospitalizations.

Because of Riley Hospital for Children, Jocelyn has remained relatively healthy since 2022 and is able to enjoy the music of her favorite artists, such as Benson Boone and Taylor Swift, and playing UNO with one of her many unique decks. Through Jocelyn’s experience, her family learned the value in enjoying and appreciating simple things in everyday life, just like she does. Today, Jocelyn is a happy young adult who loves to spend time with her family and socialize with others, touching the lives of many.