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:
A boy.
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.
A couple of months ago we held the first ever Oticon Medical Patient Advocacy Workshop. While events in the past have focused on gathering and getting to know each other, this event focused on bettering the experience for those who need or will need bone anchored hearing systems in the future.
The top concern included education for those who were experiencing the world of bone anchored hearing for the fist time. Ponto wearers and families shared that they felt frustrated at the beginning of their journey, because they didn’t get all of the information they needed outright— it took research, time and, in many cases, probing to get answers from professionals. The statement “I wish I would have known what questions to ask” is something that we heard from the group more than once. Kelley Dwyer, an Audiologist who joined our group along with her brother Derek, who got his Ponto Plus and the Ponto Streamer earlier this year, also mentioned that it’d be helpful for Audiologists if patients had more access to information and a set of questions too.
Many people in the group mentioned that they didn’t know that there were options when it came to choosing a bone anchored hearing device. For some, it took years to make the realization and in some cases, it lead to surgery for a new abutment to make a switch.
We’re working to fulfill the needs we uncovered and develop the ideas the group had from the workshop. Today, we’re asking for your help to bring one of those ideas to life.
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 →
