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.
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.
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).
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.
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).
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.”