Parents, kids walk to raise awareness of apraxia

Parents organized a walk to raise awareness at Pullen Park in Raleigh.

Heather Waite and her daughter Rebecca Lynn didn’t always have the support network they do now.

“I noticed she wasn’t making a sound,” Waite said. “She was never babbling; she was never trying to say a first word.”

Waite took her then-15-month-old daughter to speech therapists.

They went through seven of them.

“Everybody looked at us and said, ‘We don’t know what this is,’” Waite said.

The next therapist was different. She thought Rebecca Lynn might have apraxia.

Waite said that was the first time she had heard that word.

Apraxia is a severe neurological speech disorder in which the brain doesn’t communicate with the mouth to form words.

Therapy can help people with the disorder improve.

Apraxia events, like the walk Saturday at Pullen Park, can spread awareness so families can get kids into needed treatment.

“I was like, oh, my God, this is it,” Waite said. “This is what she has, and there’s hope.”

The disorder can be genetic or brought on by trauma.

Looking back on her own childhood, Waite says she also had trouble speaking, although her parents did not know the word for it at that time.

Now, she thinks she, too, struggled with apraxia.

As for Rebecca Lynn, now 6, her speech continues to improve.

“Sometimes my friends at school say I talk weird,” she said.

In the four years Waite has organized the apraxia walk, participation has more than doubled.

Waite said that, with with treatment, most kids can learn to speak at some level. Without awareness, some parents may not get a diagnosis until a child is 10 or 11 years old.