Being a teenager is a fun, but it can be hard work too. Andrew Perry, a 14-year-old born with Treacher Collins and Bilateral Microtia and Atresia, has conductive hearing loss in both ears making participation, working in groups of students and hearing class lectures even more draining than it can already be.
“Straining to hear can make someone with a hearing loss tired throughout the day,” says Melissa Tumblin, Founder of Ear Community. The background noise common in rooms full of students made concentration difficult for Andrew. Clyde, Andrew’s father, said that Andrew’s academic performance had declined significantly, and he believed it was because of the difficulty of hearing and following instructions in the classroom.
Here’s how an Audiologist went the extra mile for Andrew, as first told on Ear Community.
A couple of months ago we held the first ever Oticon Medical Patient Advocacy Workshop. While events in the past have focused on gathering and getting to know each other, this event focused on bettering the experience for those who need or will need bone anchored hearing systems in the future.
The top concern included education for those who were experiencing the world of bone anchored hearing for the fist time. Ponto wearers and families shared that they felt frustrated at the beginning of their journey, because they didn’t get all of the information they needed outright— it took research, time and, in many cases, probing to get answers from professionals. The statement “I wish I would have known what questions to ask” is something that we heard from the group more than once. Kelley Dwyer, an Audiologist who joined our group along with her brother Derek, who got his Ponto Plus and the Ponto Streamer earlier this year, also mentioned that it’d be helpful for Audiologists if patients had more access to information and a set of questions too.
Many people in the group mentioned that they didn’t know that there were options when it came to choosing a bone anchored hearing device. For some, it took years to make the realization and in some cases, it lead to surgery for a new abutment to make a switch.
We’re working to fulfill the needs we uncovered and develop the ideas the group had from the workshop. Today, we’re asking for your help to bring one of those ideas to life.
Ponto Wearer Kris Siwek Gives— and Gets— the Ultimate Gift
Kris Siwek is a Ponto wearer and advocate that we know well. Kris suddenly lost her hearing after being diagnosed with a tumor at age 29. Kris, pregnant at the time, did intense research to find the best solution for her survival and recovery— from her acoustic neuroma removal to finding the right hearing solution. Kris actively shares her story and advocates for those with acoustic neuromas and hearing loss.
When we spoke with Kris last week, we could see her face light up when she mentioned her donated Ponto would go to a 7-month-old through Ear Community. Heres’ more about that 7-month-old, Clark. As Kris put it, “It’s just so perfect.”
“In April of 2014, Max and Melissa Witt gave birth to a beautiful sweet baby boy named Clark. When Clark was born, he was originally diagnosed with having Goldenhar Syndrome and Hemifacial Microsomia. Clark was also born without his left ear due to having Microtia and a missing ear canal due to having Atresia, resulting in hearing loss,” Melissa Tumblin, Founder of Ear Community writes in the original piece about the story on Ear Community. “Clark’s parents did everything they could to provide him with proper healthcare prenatally. They had level 2 ultrasounds, genetic screenings, even a fetal echocardiogram… However, it wasn’t until Clark was almost 2.5 months old (after birth) when Clark’s doctors discovered that his heart had a double aortic arch. Clark underwent heart surgery at just 5 months of age to fix his heart.” Continue reading →
What would any 6-year-old boy say about being featured in a comic book? “It’s awesome,” said Anthony Smith about being the inspiration for the Marvel superhero “Blue Ear.”
Anthony has been through a winding journey in the quest to help him hear. As part of that journey, Anthony’s mother, Christina D’Allesandro, even helped him become a comic book superhero.
Early on, Anthony realized that other kids his age, and more importantly, superheroes in comic books and on television, didn’t wear “Blue Ears,” the nickname his family gave his hearing device. This made Anthony feel different than other children. His mother, Christina, assured him that superheroes did wear hearing devices too. Although she didn’t know for sure if she could find such superheroes, Christina didn’t stop at just saying they exist.
Kevin Hotaling is a sophomore at Stonehill College who got his Ponto Plus on October 13, 2014. When we saw the video of Kevin’s activation, we just had to meet him. We knew you’d feel the same.
So, here’s Kevin to tell you a bit of his story:
I originally found out about Ponto through one of my mother’s coworkers. She didn’t have the Ponto, but she had a very similar bone anchored hearing aid procedure done, and she’s had results that were nothing short of stellar. I was nervous originally. Although surgery was nothing new to me, the idea of someone drilling into my skull was very unsettling. In addition to that, I hadn’t heard of any people my age who had ever gotten the procedure done. I had only ever heard of adults and small children owning the system, never a teenager. I was given the opportunity to test the device using a headband, and immediately, I noticed a massive difference in my hearing quality.
Last weekend was one of our favorites of the year. We gathered over 20 patient families from all around the United States at our U.S. headquarters in Somerset, New Jersey. While we spent plenty of time talking, laughing, sharing stories and tears, we came together to work—to work on building a better future for those who have yet to begin their journeys in getting Bone Anchored Hearing Systems.
On Saturday, we came together for a full day of design thinking workshops that asked two key questions:
How can we make the road easier for those who are starting their journey?
What’s are next things we’ll do as advocates, if the sky’s the limit?
A few months ago, we first introduced you to Shannon and her daughter Ava. Shannon took the time to tell us about her journey in finding out that Ava had hearing loss and what came after. Today, we’re excited to share another milestone in Shannon and Ava’s lives, as told by Melissa Tumblin, Founder of Ear Community.
Meet Ava Katuszonek, an adorable little three year old girl who was born with Microtia and Atresia of her right ear. Ava is a very happy little girl who enjoys playing with friends and is excited to learn the alphabet and begin reading. However, when Ava was about one year old, her mom, Shannon, began noticing her struggling with her hearing. Ava wasn’t always responding to Shannon’s voice when she would call for her. Two years ago, Ava and her parents, Paul and Shannon, attended an Ear Community Microtia and Atresia picnic in Pleasanton, California where they were given the opportunity to learn more about bone conduction hearing devices. Ava’s parents tried to obtain a BAHA for little Ava as soon as they could, but their insurance plan under Kaiser Permanente denied their coverage for a BAHA. Ava’s mother, Shannon, also did not realize there were many options available on the market for BAHAs. Now knowing this information, Ava’s parents continued appealing with their insurance provider in order to help Ava hear better with a BAHA.