We all want our hopes and dreams to come to fruition, but what happens when they come to fruition before you’re ready? For Anne and Robert Brooks, their hope and dream was to give birth to a baby boy. This aspiration did come true, but too soon—their son, Luca, was born prematurely at 34 weeks.
As a result of the early delivery, Luca was born with, as well as diagnosed post-birth with Branchio-oto-renal syndrome. Anne and Robert with met with an Audiologist and ENT to learn more about Luca’s condition and potential solutions. After learning about all of the hearing solution options, they set out on a long and tiresome quest over the course of a year that consisted of carefully written emails, letters, and marathon phone calls with their insurance provider. Ultimately, this proved to be a fruitless effort, as they were denied coverage.
During this time, they came across Ear Community and learned met many other families who shared their stories and advice.
What does your day-to-day look like? It probably involves waking up, getting ready and going to work or school. In just the first couple hours of the day, there are the sounds of the alarm clock going off, the shower turning on, the coffee machine percolating, the car turning on or the bus pulling up and the hum of traffic.
If you’re like many people, your day also includes some type of activity. Running, riding a bike, and playing sports—all activities in which sound continues to play a crucial role.
Here’s how two of our community members play best with their Pontos.
The Creative Karate Kid
Sonja Dadderio’s son Jack loves Karate, and he wears bilateral Pontos on a softband. He recently advanced to a red belt, requiring a helmet during activity. Sonja and Jack got creative. When Jack practices karate, they remove one of his Pontos and shift the other to the back-middle of his head. They found a gap in the back of the helmet, which allows the Ponto to sit unobstructed.
Remember Anthony Smith, also known as Blue Ear? The seven-year-old who inspired Marvel Comics to create a new Superhero with a listening device just received a super upgrade.
Success and popsicles!
Recently, Anthony had surgery to go from temporary to temporal, having an abutment placed that would allow him to move from a Ponto on a softband to using the Ponto on a titanium implant that sits in the bone behind the ear.
After a long wait, Anthony had stage 2 surgery for his Ponto abutment on May 5, 2015.
“We waited 14 months to try again and we were all so happy to get the go ahead. Working with our provider we decided a two stage surgery would give Ants the best results,” Christina explained.
We’re excited to introduce you to a new member of the Oticon Medical family– and hopefully soon to be a member of yours too! Meet our new mascot. Not only is the Oticon Medical monkey cuddly and cute, it wears its own Ponto Plus.
The only problem? This monkey doesn’t have a name yet! We wanted to leave that up to YOU! Starting today through May 22, 2015 at 5:00pm EST, we’re taking your name suggestions. Not only will we pick a winner from the suggestions that come in, the first 20 people to share their suggestions by using the form below will get their own monkey.
Hudson Yost, born in China, was adopted by American parents at the age of three-and-a-half. Born with Atresia and Microtia, Hudson has profound hearing loss in his left ear and moderate hearing loss in his right ear. Now four years old, despite the challenges of Atresia and Microtia, Hudson has developed a solid vocabulary and can communicate with others.
While learning to communicate in english and forming a strong bond with his new parents, Hudson’s mother, Tammi Yost, wanted him to have every opportunity to develop like any other child. Tammi learned about Ear Community’s donation program, and applied for Hudson to receive a bone anchored hearing system (BAHS).
We’ve shared quite a bit about our favorite comic book hero, Blue Ear. Blue Ear is a Marvel comic book character inspired by Ponto Plus wearer Anthony Smith. When 6-year old Anthony asked his mom if any superheroes wore hearing devices, Christina D’Allesandro reached out to Marvel. Marvel went to work and created an official comic book centered around Blue Ear, a superhero who uses his special listening device to help people in trouble.
Marvel has provided us with 25 copies of the official–and admittedly hard to get–Blue Ear comic book, and we’re thrilled to announce that we’re giving them away through a new contest! Like Blue Ear, we know that #SoundMatters to you.
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 maximum 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.
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.
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.