It’s been another summer full of amazing picnics hosted by our friends over at Ear Community—with a few more still to come! Each year Ear Community hosts picnics all over the world, where families come together to learn from each other, discuss the latest hearing technology, have fun in the sun, and meet other members of the community!
So often, parents tell us that they wish they would have had a place to learn more about their child’s hearing loss. With learning more, there are also questions: When is the right time to search for a solution? What goes into your child getting a bone anchored hearing system (BAHS)? With an endless number of considerations along the way, it can be a complex journey.
To help answer your questions and introduce you to two parents who have been through the process, on August 25 at 12:00PM EDT, Audiology Online and Oticon Medical will host the live online event Parents’ Perspective: The Decision Making Process for Bone Anchored Hearing Systems for Children.
In this live online event, you’ll hear from Melissa Tumblin and Ann Pipes. Melissa and Ann, who both dedicate their time to helping others seeking hearing solutions and bettering the hearing industry, are both mothers to children who use BAHS.
Meet Melissa and Ann
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.
As a child, one of the most exciting parts of growing up is having every experience be a new experience. Your formative early childhood years are when you first make sense of your senses–learning different tastes, smelling different smells, seeing different sights, touching different textures, and hearing different sounds.
Born in the Philippines with Microtia and Atresia of her right ear, 4-and-a-half year old Annika Silang-Ferrer experienced the world, but she did so with moderate to severe hearing loss.
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).
Hudson’s Story and Bright Smiles
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.
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.
We’re thrilled to once again be a sponsor and an active participant in the picnics. We’ve met so many of you through these amazing events. Here’s where you can learn about some Ear Community connections ahead of the events.
Here are some pictures from last year.
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.
UPDATE: On October 9, 2015 Camilla took home first place in the category of “advocacy” for the 2015 Oticon Focus on People Awards.
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).
Here’s Camilla to tell her story.
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.”