Hope to Hear
By Riley Bunch | Photography by Mary Grace Johnson
For the first five years of her twin daughters’ lives, Mona Smart had no idea they were living with a hearing disability. The girls, Genevieve and Laila, excelled in school, showing no signs of being unable to hear fully. It wasn’t until kindergarten, when they both failed the school’s hearing tests, that Mona started to put the pieces together.
During car rides, Mona’s comments to the girls were met with complete silence. Her husband noticed that when he would put them to bed at night and said, “I love you,” the twins replied with nothing but a smile.
None of this would have made sense to Mona if she hadn’t attended an event run by her now close friend, Diane Pluff, several years ago.
Diane is a mother of two daughters, Anna and Sophia. When each of her girls was tested at birth, Diane found her children both had the same genetic hearing disability. Anna, her oldest, had hearing aids by the age of seven months. Through Onondaga County’s Early Intervention Program, Diane found support during her girls’ developmental years.
As they grew up, Diane realized not all families have the resources to pay for hearing aids for infants born with hearing disabilities. The price for hearing aids for one child can range from $4,000 to $6,000, according to Anne Costa, Aurora of Central New York’s assistant director.
Often times, through the county, children had access to hearing aids at school, but would have to leave them there at the end of the school day. This led Diane to spearhead a new program to help families who have children born with hearing disabilities — the Children’s Hearing Aid Program (CHAP) through Aurora of Central NewYork.
“Our kids are lucky that they came into our family,” Diane said. “There are a lot of families who have to decide if they’re going to eat or buy a hearing aid. And there is not as much support for hearing-impaired [children] as there is for visual impairment.”
Diane hosted a CHAP fundraising event at her home, where she met Mona. That day, Mona listened to a story from a mother whose child was hearing-impaired and had received services through CHAP. It hit home for her.
“I’m sitting there and she’s saying certain things,” Mona said, “and I’m just thinking, ‘This sounds a little bit like what’s going on at my house.’”
Further tests revealed both of Mona’s girls had significant hearing loss due to enlarged sections of the inner ear. Mona’s friends and family were shocked; many of them had never noticed any challenges the girls were facing. Often times, Diane explained, children with hearing disabilities compensate with visuals to the point that the impairment goes unnoticed.
After learning the high cost of hearing aids for Genevieve and Laila, Mona shared the same thought as Diane — there needs to be a program aiming to help families who cannot afford hearing aids for their children.
From then on, the mothers’ friendship grew into a strong partnership. The duo worked together to lead the CHAP program, organizing fundraisers and advocating for children and families dealing with hearing disabilities. In the last five years, the program has provided more than 60 hearing aids to children within the community through grants and private funding.
At the end of 2016, the pair organized one of the most successful fundraising events at The Krebs restaurant in Skaneateles, hosting hundreds of community members. The event featured celebrity bartenders, including both Diane and Mona’s husbands and local businessman Adam Weitsman.
Early in the evening, the venue was so packed that guests couldn’t even enter through the front doors. The event ended up bringing in just short of $10,000 for the program, an amount much higher than anticipated, Diane said.
“People really supported us,” Mona said. “People that don’t have the time donated what time they had … The amount of money we got is just a perfect example of the community we live in. When you tell people something is important to you, they show up.”
The pair hopes to further the program by finding more audiologists willing to donate their time to help hearing-impaired children within the community.
“That’s my most important job,” Mona said, “to advocate for my kids and for others who don’t have people that are advocating for them. Everybody has a right to hear … and to live the fullest life they possibly can.” SWM
For more information about the Children’s Hearing Aid Program at Aurora of Central New York, visit auroraofcny.org/services/childyouth-services.
Addendum — Aurora of Central New York would like to thank the following people and entities for their support of CHAP: Dr. Arlene Marko of Hear 2 Learn; CNY Community Foundation, the Pluff family and the Gifford Foundation.