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.
In the middle of winter, it’s always fun to look ahead to the summer. Summer time also means it’s time for Ear Community’s Microtia and Atresia Summer Family Picnics. The picnics provide an incredible opportunity for Microtia and Atresia families to come together, share experiences and make new friends. Medical professionals also join in the fun and are available to answer questions and help to educate families on options for hearing loss. Families will even be able to test out the newest state-of-the-art hearing products.
Weesie Pals are custom stuffed animals that can be made to have a little ear and stuffed toy bone anchored hearing device. Weesie Pals are created by Erin Wozniak who was inspired by her daughter Elyse. Elyse, who’s nickname is Weesie, was born with left-side Microtia and Atresia, meaning her ear did not fully develop. Elyse, now two years old, wears a Ponto Pro on a softband.
“When Elyse was an infant, I wanted her to have some type of toy that she could identify with and a way to reinforce her wearing the Bone Anchored Hearing System (BAHS). Also, you can take the device off of the stuffed animal and put it on anything– even someone else. Even mommy can wear it!”
When Erin made the first Weesie Pal, a mouse, Elyse loved it and wouldn’t put it down. As an artist and art teacher, Erin is always making things but oil painting and drawing are her expertise. When it came to sewing, she taught herself. She’s a quick study, because now there are a variety of options.
Today, we would like to share a special story. After years of confusion and frustration, Camilla was able to connect with peers and mentors–including our friend Justin Bays–who helped lead her to the hearing device that’s right for her– all thanks to the incredible efforts of Ear Community.
Camilla was Ear Community’s very first college scholarship recipient. Camilla is now working on her graduate degree, and she’s a wonderful single mom too! Camilla’s family are long-time supporters of Ear Community. Camilla is also a member of the Hearing Loss Association of America (HLAA).
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 →
The strength of the bond between siblings is hard to define. The love we feel for our brothers and sisters is unconditional, and in some cases, truly inspiring to others. Brother and sister Derek and Kelley Dwyer are an example of inseparable siblings who would do anything to help each other.
As you may already know if you spend time with us here on the blog or on Facebook or Twitter, our friends at Ear Community, a 501c3 nonprofit organization, help people born with Microtia and Atresia, which results in hearing loss. Through donations, they provide equipment and services to help those suffering from these limitations to gain a greater ability to hear and communicate with others.
Ear Community recently shared the story of Derek Dwyer and his sister Dr. Kelley Dwyer. Derek Dwyer is a 22-year-old computer engineering and graphic design major at Gwinnett Technical College. He’s a passionate fan of music and technology. The youngest of three siblings, Derek was born with Nager Syndrome and bilateral Microtia and Atresia. Microtia and Atresia have contributed to hearing loss for Derek, making it difficult to listen in lectures and communicate with others in school.
His sister, Dr. Kelley Dwyer recently graduated with her doctorate in Audiology and serves as a pediatric audiologist at Pediatric ENT of Atlanta. She has studied and worked tirelessly to help her brother, who serves as a source of motivation to her. “Derek has been my biggest inspiration in life…he defies the expectations of a special needs person and knows no boundaries to his capabilities.”
After discovering Ear Community and the opportunity for equipment that would assist her brother in his transition into college life, Dr. Dwyer applied. “Derek never asks for anything, so I am going to ask for him.”
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.
In honor of the amazing connections that happen at Ear Community’s Microtia and Atresia Summer Picnics, we’ve asked attendees to share their experiences with you here on our blog. This week, you’ll hear from Shannon Katuszonek, a mom who is forever grateful for finding her strength through Ear Community.
Here’s Shannon to tell her story.
We had no idea my daughter, Ava, had a condition. When she was born it was quite the shock. As if learning to understand what her little ear meant wasn’t enough, she was our first child, so we had little frame of reference for newborns in general.
So, we took in whatever information the doctors gave us. We knew she failed the newborn hearing screening test. Then, our Microtia Pediatrician started telling us about the other things that could be wrong with her. “She could have Goldenhar Syndrome, a heart condition and more. But, we’ll just wait and see how she develops.”
There we were…
You’re looking at this beautiful little baby that you’ve been waiting for, and now you’re so overwhelmed. You can’t enjoy the moment, because you’re so worried about all of the things that mighthappen.
My 14 month old daughter Olivia was born with Microtia and Atresia of her left ear. I came across Ear Community shortly after she was born. The hospital knew absolutely nothing about her condition. No references or literature. It was a very emotional and confusing time.
As we’ve mentioned many times, one of our favorite things about summer is that it’s time for Ear Community’s Microtia and Atresia Summer Picnics. This year, in honor of the amazing connections that happen at these picnics, we’ll be sharing the experiences of attendees. We’ll start with an overview from the Founder of Ear Community, Melissa Tumblin.
“We had 220 people RSVP for our California picnic that took place in Pleasanton, California on June 21, 2014. We had Cochlear, Oticon Medical, and Stryker CMF as sponsors who attended to help families learn about their options. We had an anaplastologist there helping families not just learn about prosthetic ears, but to also physically see and touch them. Many people tune out the option for a prosthetic ear until they see how real they look and how well they can be matched to skin. Many times, in a line up, people can not pick out who is wearing a prosthetic ear because they look that real and blended,” Melissa explained. “We also had Dr. Joseph Roberson who joined us from the California Ear Institute as one of the world’s leading Otologists/Neurotologists for atresia repair and also Dr. Grant Fairbanks who helped families learn more about the rib graft option for external ear reconstruction.”