Haven’s Superpowers: Enthusiasm, hard work and sweet enough to melt hearts

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When Haven Sottos, 10, of Long Grove, Iowa, was born, doctors told her parents that they didn't know if she would ever smile, laugh, eat or talk. With the help of MercyOne Genesis Bettendorf Pediatric Therapy (GOPEDS), she can do all those things.

Haven had been born with the umbilical cord wrapped around her neck twice, and so it was pulled so tightly that she lost all oxygen and blood flow to the brain. The result of the injury was cerebral palsy, specifically mixed spastic dystonic quadriplegic cerebral palsy.

Spastic dystonic quadriplegic cerebral palsy is the most severe form of cerebral palsy. It affects all four limbs, the trunk, and facial muscles, combining extreme muscle stiffness (spasticity) with fluctuating, involuntary twisting movements and postures (dystonia).

The therapists at GOPEDS have been working with Haven and her family to help her overcome challenges throughout her life.

“She's been coming here for a long time and is one of the sweetest, most kind kiddos we've ever seen. When she comes into a room, everyone knows she's there, and she's just one of those people with an infectious personality,” said Kara Housewright, DPT, MercyOne Genesis pediatric physical therapist.

“We didn’t know if she would smile, laugh, eat, talk, or any of that. So of course, now we're here, and she can do all those things. But on the first day we heard her laugh, I remember it was the most amazing thing to listen to. Her laugh is so contagious,” her mom, Heidi Sottos, said. 

Haven’s progress has outdistanced her original prognosis. But where she has come the furthest is in her language skills.

“She can’t verbally speak other than a few specific words, so she must use her communications device to help her communicate. She knows what she wants to say; it’s just a matter of finding the word or phrase on the device,” said Amy Wethington, MA, MercyOne Genesis speech-language pathologist.

Amy describes the communication device as a “fancy iPad.” Haven can find the word, represented as a picture, press the button and the device will say the word for her.

“We have worked on finding the word and forming simple sentences, to now taking complex thoughts and telling stories on her device.”

Her dad, Luke Sottos, describes his daughter as “ornery, determined, smart and funny. And she has a lot to say.”

He credits the therapists at GOPEDS with giving his family the direction and measurable goals to help Haven achieve her dreams. 

“Now she’s writing stories at school and telling us her goals. In one of the stories she just wrote, she got to go in the elevator by herself, push the button, go to the second floor, and come out – she said it ‘felt like a dream’. It was really cool to see her express that by putting it into words.”

When it comes to her physical therapy, Haven exhibits nonstop enthusiasm and hard work. 

“Haven's diagnosis makes it challenging for her to do daily activities that for us would be easy, such as walking and getting up to standing,” Kara said.  

Physical therapists often use the universal exercise unit, also known as the “cage,” to help Haven strengthen her muscles and increase her range of motion. The device uses a system of bungee cords to reduce stress on both Haven and the therapist.

Haven’s dad, Luke, gets choked up when he talks about his daughter. For the Sottos family, there is no looking back to what could have been, only looking forward to what can and will be done. 

“Even when she was little, I said one of her superpowers was that she could melt people’s hearts. It’s been like that for 10-years. She means the world to us,” Luke said with tears in his eyes.