University of Iowa Hospitals and Clinics

The Winston Family

Mother and father with daughter in walker
"My kids are super happy kids."

The Winston household includes Ken and April Winston, their daughters Savannah, Aleah, and Skye, and April's son Atreyu. Aleah, 3 years old, and Skye, 1 year old, have been diagnosed with global developmental delay, believed to be the results of PLEC gene-related disorder. Both girls met early milestones and then began to regress. "Skye was on track for the first even months and was even standing on the couch," said April. "Within two weeks she lost everything." Both girls have feeding tubes and receive physical therapy, occupational therapy, and speech therapy. Their oldest daughter, Savannah, has only one of the gene mutations, and is otherwise unaffected.

Atreyu, 8 years old, has autism, intellectual disability, and pica. Sometimes the difficulties of autism can lead to behaviors that are challenging to understand and address. It's hard for the Winstons, for example, to leave the house when respite is not available for Atreyu, "I don't want Atreyu to get hurt, and I don't want someone else to get hurt," said April. "He's very, very strong." Among their three children with special health care needs, they see 13 specialists, most of them over two hours away in Sioux Falls, South Dakota.

Savannah will sometimes get upset when her parents who the other children too much attention. "For the most part she is very caring of her siblings," said April, "but you can tell that at times she just wants some along time with her mom and dad." The Winstons receive ongoing support from their extended family and the community. "If it wasn't for Community Health, we wouldn't have car seats," said April. "Atreyu's car seat was very expensive. Even the local bank is a huge supporter; they helped us to buy a van."

Ken and April find joy in the milestones that their children continue to reach. "My kids are super happy kids," said April. "They have a ritual on Saturday morning where Ken and Savannah dance, while the other kids watch and laugh." 

Boy sitting on the grass with his fatherMother hugging her son on the couchTwo young girls in hammock swings