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Four-year-old raises awareness of rare speech disorder

A family went all the way to the state capitol to help raise awareness of a rare neurological speech disorder. (Courtesy: Sarah Shutler)

GRAND TRAVERSE COUNTY, Mi (WPBN/WGTU) - A family went all the way to the state capitol to help raise awareness of a rare neurological speech disorder.

We sat down with a northern mom who opened up about her son's journey, battling Childhood Apraxia of Speech.

"The more we learned about it the more we kind of thought yeah this does sound like Kellen," said Sarah Shutler, Kellen's Mom.

Four-year-old Kellen was diagnosed with a rare neurological speech disorder called Childhood Apraxia of Speech when he was 18-months-old.

"We started to get concerned about his language," said Sarah. "He wasn't talking at all, very minimal, kind of grunting sounds."

According to American Speech-Language-Hearing Association, Apraxia is a motor speech disorder and in children like Kellen, it can cause them to struggle with saying sounds, words and syllables.

"They [Early On Specialist] found his expressive language in the 2nd percentile and his receptive language in like the 85th percentile," said Sarah. "So just a huge difference between what he understands and what he can put out."

Sarah says if your child does struggle with speech, the most important thing for them is intervention.

"Right now, he it is set up to have speech four days a week- twice at the school and then twice with his private therapist," said Sarah. "And he spends two hours a week with the private therapist in her home doing really focused Apraxia-based therapy."

To raise awareness, Sarah requested there be a day in our state as Apraxia Awareness Day, something that Governor Snyder recently proclaimed for May 14th.

The one that got to go pick up the proclamation from the capital building was none other than Kellen himself.

"My husband and I have always believed that he is who he is for a reason and I feel like we have this job now as his parents to be his voice," said Sarah. "You know, he doesn't have a voice in the way that he should and so it's our job to help speak up and speak out for him."

Kellen's speech therapist, Suzanne Parker, says he will most likely be in therapy for the remainder of his school years.

However, she says since November, he's made progress.

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