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.
Not for Alyssa (Aly) Klepper. Aly is a California girl who’s letting nothing stop her from pursuing her dreams. Born with an unidentified neuromuscular disease, Aly is deaf in her left ear. As a fan of Hollywood, films and television, hearing is an important part of her life and future career. In the fall, Aly will attend California State University, Fullerton to pursue a major in film and television production. “I am currently taking two film classes at my school, and I cannot wait to take it to the next level at Cal State Fullerton! Every aspect of this field interests me, including the way a crew/actors come together and make something that can make you feel any emotion,” Aly explained.
Today, Aly’s story has reached over 150,000 people through YouTube. The video: Aly hearing with her Ponto Plus for the first time. “I decided on the Ponto Plus after trying out everything that was available to me. It was the clearest, and I had no doubts when choosing it.” Aly had the abutment implanted on June 28, 2013, and her Ponto Plus was activated on September 28, 2013.
As Tim recalls, Anthony’s mother, Christina D’Allesandro, reached out to Marvel through their general email. Despite all of the requests that Marvel gets as one of the world’s most prominent entertainment companies with a library of over 8,000 characters, they didn’t take her request lightly.
Bill Rosemann, a Marvel editor, took special notice. He artist Manny Mederos and Trades Department Editor Nelson Ribeiro, sent the D’Allesandro family comic book covers featuring their very own versions of honorary Avenger Blue Ear, inspired by Anthony. Then, Mederos did a team up sketch between Blue Ear and Hawkeye, who suffered hearing loss as an Avenger. This started the life and adventures of Blue Ear, who’s now an official Marvel character and stars in his own one-shot (for now) comic book.
While Marvel works to support as many people as possible, they’d never done it in exactly this way before. For example, Tim mentioned Marvel’s character, Captain Citrus, in support of Florida orange growers and to encourage a healthier diet for children.
We wanted to recap a few of our favorite moments of 2014– just in case you missed any of these incredible stories.
In 2014, Your Voices Were Heard— On October 31, 2014, after a several-month-long battle, the Centers for Medicare and Medicaid Services (CMS) ruled that Bone Anchored Hearing Systems and auditory osseointegrated implants (AOIs) will remain a covered benefit for Medicare enrollees with qualifying indications.
There are many amazing aspects of life that we often take for granted. Sometimes, we don’t realize how important and amazing our basic senses are until we no longer have their full ability.
Earlier this year at the Oticon Medical Patient Advocacy Workshop, Ponto users and parents shared the sentiment that it’s hard for people who have never experienced hearing loss to understand its impact.
That’s why we handed over the keys. We’ve handed our Instagram account over to Ponto users to help others understand why #SoundMatters from the perspective of those who experience it every day.
Meet Vishal, a 10-year-old musician with Microtia and Atresia. We first met Vishal when he posted this message on the Oticon Medical Facebook Page:
10 years old – born with Microtia and Aural Atresia.
Student of grade 5.
I grow up in Germany because my Dad has his office out here.
He loves music.
At first he is shocked because his son is born with Microtia.
Then he remembers his conversation with God before I was born.
God was looking for parents for me like the ones I have.
My Dad promised God to be the best Dad ever.
The German Doc told my Dad just after my birth that I would not be able to hear nor speak.
My dad trusts in God and in His ways.
I get a Softband Oticon.
I win a first prize in a music competition in Germany!
Here’s Vishal to share a bit of his musical journey.
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.
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.”