WASHBURN, Maine – Few people realize the power of speech until they have lost their voice.
It is a lesson that many people learn early in life, but most don’t get schooled as early as 5-year-old Destiny Theriault of Washburn.
The Aroostook County youngster was diagnosed last year with apraxia, a disorder of the brain and nervous system that makes it difficult for her to speak. At this point, she is able to communicate only by using a speech generating device that is on loan to her. On Saturday evening, friends and family members held a fundraiser at the Washburn Trail Runners Club to help the Theriault family raise the $7,000 necessary to secure for Destiny a speech generating device of her own.
“We want her to have her own by the time she starts school in August,” Vicky Theriault, Destiny’s mother, said Saturday. Theriault and her husband, Galen, were at the clubhouse helping to set up for the benefit spaghetti supper, silent auction and dance. “The unit she has now is only on loan to her for a year.”
The family started the fundraising campaign with a bottle drive in January and had raised approximately $650 before Saturday’s event. They added $5,000 to that amount with Saturday’s supper, and Galen Theriault said that he and a friend are organizing a paintball fundraiser in the spring. All of the proceeds will benefit the “Destiny’s Voice” fund, which has been set up at local bank.
“The community has been supportive, but we were a little slow to get the word out about what we were doing because we didn’t want to make a spectacle of her,” said Vicky Theriault. “We haven’t really had her out in the community all that much, so many people aren’t aware of what she is going through.”
She said her daughter was just a toddler when she and her husband noticed that Destiny was having trouble speaking.
“She didn’t say a lot when she was younger,” she said. “She could mumble, but you couldn’t understand her. We just thought that it would come eventually and she’d start talking. When that didn’t happen, we were connected with a speech therapist who diagnosed the problem.”
Destiny can hear and understand requests, but she can’t respond orally. She knows in her mind what she wants to say to people in response to their communication with her, but she is not in control of how it comes out, Theriault said. The family has been told that this condition is similar to what happens when someone suffers a stroke that affects their speech.
The disorder can be caused by brain tumors or brain damage, neurodegenerative illness or stroke, but some, like Destiny, are born with the condition.
According to the Childhood Apraxia of Speech Association of North America, some children with the condition eventually learn to speak. Others never do.
Hearing the original diagnosis was scary, Theriault said Saturday.
“I had never heard of it and neither had my husband,” she said. “I didn’t know anyone who had the condition. I was just scared. My first thoughts were, ‘Will she ever talk? How is she going to communicate with us?’”
With help from Child Development Services of Presque Isle, which provides services to children with special needs, Destiny was set up with the speech generating device. The machine resembles a computer and has icons on it. If Destiny presses the icon that looks like a glass of water, the machine says it in a girl’s computerized voice.
“It is amazing, and Destiny is very good with it,” said her mother. “She picked it up very quickly. We keep adding icons to it as her vocabulary expands.”
Galen Theriault said that he looked into having his insurance pay for the machine, but he “kept getting the runaround” from the company. The family decided that the best way to secure it would be to purchase it themselves.
“Destiny starts kindergarten in August, and she has done really well with it in prekindergarten,” said Vicky Theriault. “It is imperative that she has her own when she steps into the classroom this summer.”
Destiny continues to work with speech and occupational therapists to help with the apraxia and balance issues she also suffers.
“She is doing well, but she gets frustrated when she is without her device and people can’t understand her,” said Vicky Theriault. “That is very hard for her. It is an expensive device, but we are determined that she will have one so that she really can have her own voice.”
Anyone who would like to make a donation may mail a check made out to “Destiny’s Voice” to P.O. Box 342, Washburn 04786. To learn more about childhood apraxia, go to www.apraxia-kids.org/.