Recognizing Apraxia Day in Long Beach

Long Beach community members banded together at the Cabana Tuesday night to recognize and raise for a little-known speech disorder: apraxia.

Childhood apraxia of speech is a disorder that makes it difficult for a child to speak, affecting about 1 in 1,000. They know what they want to say, but find it nearly impossible to coordinate the movements of lips, tongue and jaw that are necessary to form the words. Sometimes it even effects their limbs.

Bobby Sorise, 5, of Long Beach has had difficulty speaking since he was a toddler — unlike his twin brother, Joseph, who speaks normally. But Bobby was not initially diagnosed with apraxia, and his mom Kristi Rook-Sorise and her husband, David, had no idea what his condition was. After several tests and studies, including at Hofstra University, he was finally diagnosed.

After receiving the diagnosis, clarification and help, Rook-Sorise wanted to make more people aware of apraxia. Around the country, May 14 is recognized as Apraxia Awareness Day. On Tuesday, thanks to the Sorise family, it was officially recognized in the City of Long Beach.

“He works so hard just to get the words out and it’s even harder when he’s excited and happy or winded from just running around and being a kid,” Bobby’s mother, Kristi, said. “But he doesn’t give up. He is our superhero. So, we asked our city to stand with us and declare May 14 as Apraxia Awareness Day. It’s a big deal because it means we’re shining a light on something that doesn’t get enough attention, making sure other families get the help that they need way faster than we did.”

City Council member Mike Reinhart and City Manager Dan Creighton presented a proclamation, ensuring Long Beach joined in recognizing Apraxia Awareness Day. They stood beside Bobby as they read aloud, certifying the day. Legislator Pat Mullaney also presented the family with a proclamation.

“Nobody rallies together as a community like Long Beach,” Reinhart said. “I think this is the start of something big, and what you need to start something big is an inspiration and inspirational figure. Who better than Bobby, our rock star. Apraxia Awareness Day aims to unite community members, children with childhood apraxia of speech and their friends and family to be an unstoppable united force advocating for their children.”

The event had raffles, bracelets, T-shirt sales and donations, with the proceeds going toward Apraxia Kids, a foundation Bobby’s mother volunteers with. The Michelle O’Neill Foundation and National Grid each donated a substantial amount of money for the cause. David Sorise’s band, The Big Sexy, also provided live music throughout the night.

“We want to increase the education, the mentorship, the training,” said Dr. Julie Case, who worked with Bobby during his testing at Hofstra University. “I thank Kristi so much for being here, for having this event so that we can increase the awareness. I thank all of you for being here to support childhood apraxia of speech, so that we can really make a difference, educate, train, get the word out there and really, truly let every kid find their voice and help us understand what we need to do better.”

Tuesday night was only the beginning of Apraxia Awareness Day in Long Beach, and who knows where it will go from here.