GEORGETOWN — Like any mother, Nicole Canny thinks the world of her daughter, Lilah, who turns three years-old at the end of the month.
“She has amazing potential,” Canny said. “We don’t see her differently with or without the hearing aids. But this would help her to do everything the same way that everybody else does.”
Lilah was born with enlarged vestibular aqueduct disorder (EVA) which causes moderate-to-severe hearing loss.
“It is basically like someone is talking to you underwater,” Canny said. “You are aware that there is noise but you wouldn’t be able to make any sense of what was actually being said.”
While Lilah can hold a stereo speaker close to her ear to hear music and makes use of hearing aids for day-to-day conversations, crowded areas like auditoriums or sports fields can be a problem for the active little girl. That could cut her out of sports and activities like soccer and dancing and could lead to problems with social interaction down the line.
“She is definitely a girly girl,” Canny said. “But she really loves to get into a game. Obviously with the EVA we couldn’t have her doing things like playing soccer. Because if she were to hit her head she could suffer further hearing loss, but that is not to say a non-contact sport wouldn’t be out of the question. Right now she just really wants to go and dance and participate in ballet class.”
Determined to expand her great niece’s horizons as much as possible, Canny’s aunt, Karen Jacobs, started a GoFundMe campaign, “Hearing Help for Lilah,” to offset the costs of a personal FM amplification system for Lilah that her health insurance does not cover.
“I know that they are doing the best that they can,” Jacobs said. “I know that they work hard and could use a little extra help to offset some of the costs.”
The FM amplification system would wirelessly transmit the voice of a family member, a coach, or teacher directly into Lilah’s hearing aid, diminishing — or even eliminating — background noise, and opening up a world of possibilities.
“She could basically do just about anything that she wanted to,” Canny said. “It is incredible. It could make a lot of things accessible for Lilah.”
The costs of an amplification system (over $3,000) is not covered by the family’s insurance, however. Also, only $2,000 per ear is covered for the cost of replacement hearing aids, which Lilah goes through bi-annually every three years.
“She has enough going against her,” Jacobs said. “We just want her to have all the opportunists other kids have.”
Canny said that she knows there are other children out there with greater needs, her family is just hoping to give their little girl the same experiences as any other.
“Lilah is incredible and there are endless possibilities for her,” Canny said. “I am certain she can do anything. I don’t think of Lilah as having a disability. I think she experiences the world differently than everybody else. People see the world through different sets of eyes and Lilah just experiences the world through a different set of ears.”
To donate, visit the GoFundMe page at https://www.gofundme.com/dcwjzrmk
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