Patient Story: Kid with Angelman Syndrome Thrives with Help of Genesis Pediatric Therapy - Genesis Health System

Published on September 01, 2015

Kid with Angelman Syndrome Thrives with Help of Genesis Pediatric Therapy

Gavin Staab, 4, started therapy with Genesis more than two years ago.

Gavin Staab gets speech therapy with Speech Pathologist MaryBeth Myers

Gavin gets speech therapy two times a week with
Speech Pathologist MaryBeth Myers.

Words can’t describe Gavin Staab’s smile. It’s infectious, compelling anyone he meets to beam back with equal joy. Gavin’s all-around happy demeanor is a trait of Angelman Syndrome, a genetic disorder that led him to receive treatment and make amazing strides at the Genesis Pediatric Therapy Center in Bettendorf.

“Gavin is very smart,” said Julie Staab, his mother. Julie is a stay-at-home mom, using her background in teaching to care for Gavin in the face of his cognitive delays. “He doesn’t stop. He likes to ride his bike, put together puzzles and play with bouncy balls.”

Julie along with Gavin’s father, Jeff, are a team, raising Gavin along with their two other kids, Connor and Audrey. They are committed parents, their dining and living room walls lined with classroom-like activities. This isn’t just to benefit Gavin, but all three of their children.

Hunting for a Diagnosis

Julie and Jeff first noticed that something about Gavin was off when he was six months old.

“He wasn’t babbling,” Julie said. “And then at nine months he couldn’t sit up on his own. Until then he’d been meeting all of his benchmarks.”

When Gavin was 15 months old he started speech therapy at Genesis. At 18 months his dedicated parents took their child to Iowa City where he was diagnosed with apraxia, a motor disorder typically caused by damage to the brain. But for Jeff and Julie, that diagnosis just didn’t feel right.

Gavin and his parents headed to Mayo Clinic in Rochester, Minn. It was there the smiley two-year-old and his family finally received a correct diagnosis: Angelman Syndrome.

Soaring Forward with Genesis Pediatric Therapy

For Julie and Jeff, learning the diagnosis was like reaching the end of a maze.

“We went through a day of thinking this is awful. It was the worst thing that could happen,” Julie said. “But then we picked ourselves up the next day. We knew we had to help this kid.”

With a diagnosis in hand, Julie got a referral from Gavin’s pediatrician for physical therapy. Since Gavin had received speech therapy from Genesis in the past, it made sense to go to the Pediatric Therapy Center.

Physical Therapist Katie Powers first began treating Gavin two-and-a-half years ago. She previously worked with a patient with Angelman Syndrome, but realized that Gavin’s situation was completely different.

“Early intervention has been very beneficial for Gavin,” Powers said. “But he also has very dedicated parents who take his therapies seriously. My role in this is to be a teacher—to teach them [Jeff and Julie] how to help him at home. And they are remarkable with what they do for Gavin.”

To say that Gavin has made progress in his years of treatment would be an understatement. His muscle strength has increased beyond expectations, even shocking Powers when he managed to ride a bike all on his own.

Gavin Staab sits on his bike“It is surprising that Gavin can ride a bike,” Powers said. “It takes a lot of coordination. We worked with an adapted bike here that helps him to pedal. But now he can pedal a bike with training wheels all on his own.”

Erica Jansen, Gavin’s occupational therapist, has also witnessed just how far he’s come.

“Gavin has difficulty with self-care skills because of his fine motor and vision motor challenges,” Jansen said. “But he can now write the G of his name, jump, climb, and use scissors.”

Speech Language Pathologist MaryBeth Myers started treating Gavin in April. Since then, she has seen a once silent boy turn into a sound-making machine.

“Gavin is farther along than many other children with Angelman Syndrome because of his ability to produce sounds and his interest in speech,” Myers said. “Angelman Syndrome is fairly rare, but I’ve worked with a few kids in the past. The intensity and early intervention with therapy is helping tremendously.”

Just Keep Smiling

Not a day goes by that Gavin doesn’t smile. And it’s something that Julie and Jeff absolutely love about him.

“We get so much love from Gavin,” Julie said. “Angelman Syndrome is difficult--it hurts, and it’s hard…but I love the people we’ve met, and how it’s made us better people.”

And while the Staabs forever admire Powers, Jansen and Myers as their personal heroes, the therapists link Gavin’s success to his family.

“Gavin has a really good family,” Jansen said. “His mom and dad are amazing about following through with anything you give them to work on at home. He’s got a great support system.”

Myers agreed, adding, “Gavin’s mother has taught me to never give up. His parents have a challenging life with Gavin, but they have immersed themselves in helping this little boy.”

For Mom and Dad, helping their son is what it’s all about.

“It’s hard to know what’s going to happen,” Jeff said. “But we have hope.”

--By Tyler Mitchell, Genesis

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What is Angelman Syndrome?

"Angelman syndrome is a rare neuro-genetic disorder that occurs in one in 15,000 live births.

Characteristics include:

-Developmental delay
-Lack of speech
-Walking and balance disorders

Despite these constant challenges, individuals with Angelman syndrome have a happy demeanor, laugh frequently and are often smiling."

SOURCE: Angelman Syndrome Foundation

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