University of Iowa Hospitals and Clinics

The Sauer Family

Mom kissing daughter on forehead
"Respite care without a doubt is one of the most important supports we have found."

Nine-year-old Paetra has a number of conditions including intractable epilepsy, dysphasia, chronic bronchitis, microcephaly, and developmental delay, but no formal diagnosis. Doctors call this "Syndrome Without a Name" or SWAN.

Six years ago, Paetra's parents made the decision together for mom, Charlene, to stop working so she could attend Paetra's appointments and be available when one of her frequent seizures or illnesses occurs.

The family moved into Charlene's parents' home in Shell Rock, which has been remodeled to accommodate multi-generational living.

Paetra and her family have been active in their community, participating as a mentor family to Wartburg College students enrolled in a Working with Different Abilities class and moderating parent sessions for Up with Families.

Mom hugging son and daughterFamily on back porch looking at lakeFather and daughter on back porch