Helping Children Find Their Voice

As an infant, flying high in a swing was one of Elli’s favorite things to do. Her huge smile and contagious laughter allowed Elli to clearly share her love for swinging to her parents. Elli needed assistance, though, expressing herself in other situations.

The happiness of seeing their daughter clearly communicate was a feeling Elli Bennett’s parents feared they would never experience. As a newborn, Elli suffered a traumatic brain injury. Confined to a wheelchair and with restricted vocal cords, Elli could only make sounds, not words. But with the help of the Aaron W. Perlman Center at Cincinnati Children’s, Elli received an assistive communication device that allowed her to express herself more fully.

Sadly, Elli was only able to use her device for four short years before she unexpectedly passed away.

In planning the funeral, Elli’s parents, Joy and Scott, asked friends and family to make donations to the Perlman Center. The gifts would be their small way of thanking the staff for all they had done for Elli and their family.

The family was overwhelmed by the number of gifts made in memory of Elli. “Once we saw the support coming from the community, something struck a chord,” Scott says. “We thought more about what it means to give someone a voice.”

The happiness of seeing their daughter clearly communicate was a feeling Elli Bennett’s parents feared they would never experience. As a newborn, Elli suffered a traumatic brain injury. Confined to a wheelchair and with restricted vocal cords, Elli could only make sounds, not words. But with the help of the  at Cincinnati Children’s, Elli received an assistive communication device that allowed her to express herself more fully. Sadly, Elli was only able to use her device for four short years before she unexpectedly passed away. In planning the funeral, Elli’s parents, Joy and Scott, asked friends and family to make donations to the Perlman Center. The gifts would be their small way of thanking the staff for all they had done for Elli and their family. The family was overwhelmed by the number of gifts made in memory of Elli. “Once we saw the support coming from the community, something struck a chord,” Scott says. “We thought more about what it means to give someone a voice.” 

Out of the grief of losing their daughter, a way to help others emerged.

Through the Perlman Center, the Bennetts pooled the memorial gifts and created Find A Voice: The Elli Bennett Memorial Fund at Cincinnati Children’s. And they made the decision to keep fundraising. Their hope was to one day provide assistive communication devices, which can cost more than $20,000, to children that “fall through the cracks” when their families cannot pay for needed devices on their own and insurance or Medicaid denies claims to pay for them.

Elli's Journey to Find Her Voice

Before Elli received her communication device, Joy and Scott would do their best to guess what she needed each day. “I would hold out four fingers, representing four different options, and ask her to choose one,” Joy says.

The guessing system was even more frustrating when Elli was upset. “When you hear your child cry, you want to know why and do everything you can to help. Even if you can’t help, you at least want to know why she is hurting,” says Scott.

The Perlman Center, which offers programs and services uniquely designed to meet the needs of children with cerebral palsy and other chronic physical conditions, helped the Bennetts uncover funding through their insurance and Medicaid to pay for Elli’s assistive communication device.

“After going through the training and using the device as a toy, it finally clicked,” says Joy. “Elli, who was then 4, started using it to tell us what she needed.”

Elli used the device to answer questions, say what she wanted to eat and express pain. “One day Elli told us that her feet were hurting,” Joy says. “It turned out her braces were accidentally on the wrong feet.”

Elli also became more involved with her family. During one car ride, Elli’s siblings began chanting to persuade Joy to stop at McDonald’s. Elli used her communication device to join in – chanting “Fruit ‘N Yogurt Parfait,” her favorite snack.

The Bennetts discovered the device gave Elli the opportunity to define her preferences, her passions and her feelings in ways she could not before. Through the Find A Voice fund, the family strives to make these things possible for other children in need.

The First Gift

With the help of additional monies raised through local community events and the Perlman Center’s Find A Voice team at Cincinnati Walks for Kids, the annual fundraising walk for Cincinnati Children’s, the Find A Voice fund was able to provide its first assistive communication device to a child in need this past fall.

Born in Venezuela, Sebastian Mendoza had multiple health problems. Sebastian could only say a few words and with the education system in Venezuela only able to support him until he was 12 years old, the prospect of overcoming his communication barriers was grim.

“I was working for a well-known company headquartered in Cincinnati and decided to take a position in the United States so Sebastian could have more opportunities,” Alvaro Mendoza says. Alvaro and his wife, Maria, wanted their son to have the medical and educational assistance that would allow him to reach his full potential.

Arriving in Cincinnati, the Mendozas were happy to be so close to a world-class children’s hospital where Sebastian could receive care for his multiple health conditions and speech limitations.

Sebastian began working with Sherry Lanyi, a speech therapist at the Perlman Center. Sherry helped Sebastian find the best communication device for his needs and abilities. However, finding the funding necessary to purchase the device was a challenge.

The family ran into many heart-breaking roadblocks. “We kept getting rejection letters and feared we were running out of options,” Maria says.

After a frustrating year of denials, Sebastian and his parents were given the news they had been waiting for: Sebastian would receive the device he needed thanks to Find A Voice.

Sebastian now uses the device to greet his friends, answer questions during his eighth-grade classes and express his medical needs, including issues with diabetes. “Sebastian can now tell us when his insulin is low,” Maria says. That kind of communication could save his life.

“With this device, there are no barriers for Sebastian,” Alvaro says.

Joy and Scott know how it feels to see their child’s personality trapped and then freed.

“Watching Sebastian’s family experience the same joys we felt in communicating with Elli allows us to feel closer to our daughter,” Scott says.

To make a contribution to the Find A Voice fund, contact Sarah Sullivan at 513-636-5664 or  sarah.sullivan@cchmc.org.

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