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Community comes together to help a little girl who can't speak find her voice

Posted at 6:32 PM, Aug 01, 2018
and last updated 2018-08-01 18:32:14-04

Like most five-year-old girls, Naomi Gross loves to run, dance and play, but there's one thing that sets her apart from others her age. 

"She's non-verbal," Naomi's mom Jessica Gross said. "She's basically stuck inside her own body."

Gross said Naomi had a very rough start as a baby. She had issues with her health and development that went back and forth for years.

"I was continually told that she was fine. She was a little bit behind, but she would catch up and everything would be ok," Gross said.

Naomi was recently diagnosed with a neurological disorder called childhood apraxia. 

"Basically her brain and her mouth don't connect," Gross said. "She thinks. She's successful. She has a brain that wants to tell you things. Naomi gets very frustrated with us."

It has been a challenging diagnosis in more ways than one. 

"The insurance company says this is just not something they pay for period," Gross said. 

Gross said her family has appealed and Naomi's therapists have appealed, but they've been denied several times.

The final denial came in early July. Gross said the appeals continue to get denied because Naomi doesn't fit the standard mold. Her diagnosis is too broad and doesn't correlate with those typically diagnosed with childhood apraxia.

"She's been out of the box. She's never fit a doctor's criteria as to why she has what she has," Gross said. 

But in order to give Naomi the best chance to speak and to get her the professional help she needs now, the Gross family needed to come up with a lot of money.

"There's no way we could do this on our own. I'm a barber and my husband is a contractor," Gross said.

The Gross family is paying more than $350 a week for the therapies Naomi needs to develop her speech. 

"For the past year and a half, we've been paying out of pocket for her services," Gross said.

That's without the device she needs, known as a speech generating device (SGD) or augmentative and alternative communication (AAC). 

"The device is just to give her communication until her voice develops," Gross said.

But the key to helping her communicate has a price tag of about $7,000. When word got out about Naomi's need for this device and how much it was going to cost, the community stepped in.

Naomi's Voice, a benefit to help raise money for Naomi's needs, was born. The Gross family and their community are coming together now with planned events to help raise the money they need.

"It really shows you there are good people left," Gross said. 

The goal is to give a vivacious little girl the voice she deserves, a voice to match the rest of her. 

"Show people you can overcome the most impossible obstacles, if you're given the right tools," Gross said.

The community benefit for Naomi will be held on Aug. 18 from 5 p.m. to 7 p.m. at Trinity Church in Canal Fulton. It will include a spaghetti dinner, auction and raffle.