Archives for August 7, 2019

Ryle Austin Rabaya of the Philippines, bilateral Oticon Medical Ponto recipient, July 23, 2019.

Ear Community is pleased to introduce you to Ryle Austin Rabaya who lives in the Philippines with his mother, Arlyn, and his father. Austin is only one year old, his birthday was in June. He was born with Bilateral Microtia and Atresia. Even though Arlyn and her husband had no answers when Austin was born, they took him to every specialist they could find to find out what their options were to help Austin hear. They were so worried that he would struggle in his day-to-day life without access to sound.

It was very important to Austin’s parents that he grew up with typical language and speech – that he would be able to attend school, make friends, and interact with the world around him. Due to having Bilateral Microtia and Atresia, the only way that would be possible is by having Bilateral bone conduction hearing aids. Around the time that Arlyn was working tirelessly for answers, she came across the Ear Community Organization.

She soon reached out to us, and applied immediately for her little boy, Austin was only a few months old at the time. She said, “We have great and high hopes and dreams for our son to achieve, and we know and are confident that with the use of (a) BAHS device, he will be able to achieve and accomplish so much more in life, as he continues to grow.” We knew we had to help little Austin gain equal access to the sounds of the world around him!

It took some time and hoop jumping, but after some waiting – on Tuesday, July 23rd, 2019, Austin finally received his two Oticon Ponto processors! Arlyn said, “we’re very thankful to Oticon Medical and to Ear Community. I can’t explain what I’m feeling right now, all I know is that I am very happy for my son knowing that from now on, he can hear the world clearly and can live a normal life.” When Austin was fitted with his new Pontos, his face lit up and he looked around the room, it truly warmed every heart in the office that day. Austin’s family is truly thankful for everyone that was involved in helping their son receive his hearing devices so he could hear his very best.

Ear Community would like to extend a special ‘thank you’ to Oticon Medical, who has always supported our efforts to bring sound to every individual who needs access to sound. To Icee Piedad and Patrick Tan, who represent Oticon Medical in Asia, thank you for your tireless efforts to get Austin his Ponto’s. Ear Community would also like to extend a special thank you to Alex and Kristina Kosoglyadov for donating $200 toward helping Austin hear better by helping with the shipping of his new hearing devices. The Kosoglyadov Family donated to Ear Community, requesting that a donation in their daughter, Amelia’s, name go toward helping another child hear. Together with the Kosoglyadov family and Oticon Medical, Arlyn was able to receive the gift of hearing for her son, Austin. Thank you again to the Kosoglyadov Family for helping give back to the Microtia and Atresia community through our Ear Community Organization and for helping another child hear better.

A very special thank you to Alan Raffauf, Vice President of Marketing and Operations for Oticon Medical US, for choosing to donate the two new Oticon Medical Ponto 3 Superpower hearing devices to Ear Community so that they could be donated to Austin to help him hear better. Thank you to Beverly Ostrowski, Director of Customer Service, with Oticon Medical for helping ship Austin’s hearing devices. Oticon Medical is a well-respected international hearing device manufacturer that is a part of the “William Demant Group [which has] 100-plus years of experience in audiology and sound processing and established manufacturing and logistics infrastructure.”

We are beyond thrilled for Austin and what life holds in store for him! It takes many people, doing good work and extending a passion for helping others to make things like this happen. We hope to be able to continue this work for years to come, and helping many more children like Austin. The sky is bright, and the world is ready for you, Austin – we can’t wait to see what you do!

The Ear Community Organization
www.EarCommunity.org

Heidi and Tom Jeffs with their daughter, Rosalee, presenting about the Ear Community Organization and sharing their journey to a prosthetic ear at a Microtia and Atresia symposium for families hosted by Dr. Russell Griffiths

In the early days of 2012, I knew nothing about Microtia and Atresia.  The day my daughter, Rosalee, was born changed all of that.  Rosalee was born via c-section.  After she was born, my husband went with the nurses to check her, count fingers and toes, all the things.  It was then that they noticed she was missing something – a left ear.  I was still on the operating table when my sweet husband brought Rosalee all bundled up to show me her beautiful face.  He didn’t want me to know about her little ear while the doctors were still stitching me up – so he said nothing about it.  She was then whisked off to the NICU and he followed.  A little while later, I was in the recovery room with a nurse telling me to “take deep breaths” because my oxygen stats were dropping.  A nurse abruptly walked in and announced to me, “so your daughter doesn’t have an ear on one side.”……and then she left.

A baby being born is a big deal in and of itself.  When something happens that isn’t anticipated, it can be earth shattering.  So many thoughts raced through my mind in those early days of Rosalee’s life.  Would she be able to appreciate music the way I do?  Will she struggle in school?  Will kids make fun of her?  How will we as her parents handle all of that, and how will we help her in the most beneficial way?  We were so blessed to have been referred to a pediatric plastic surgeon when Rosalee was four months old.  Dr. Russell Griffiths answered all of our questions, and gently explained the options that were available to us.  It was at that time he also shared with us about Ear Community.  That appointment changed our lives forever, and shifted our journey to one of education, hope, and peace.

I have been fortunate to be a part of Ear Community for a little over six years.  Because of Ear Community, I have made friends all over the world who have children with little ears just like my Rosalee.  Because of Ear Community, I became a parent-expert on Microtia and Atresia in days; surpassing our pediatrician and early intervention team as far as the depth of knowledge I gained through the website.  Because of Ear Community, I have been a part of supporting college students further their educational journey.  Because of Ear Community, I have been a part of changing lives around the world through the donation of bone conduction devices.  I have found a true friend in Melissa Tumblin, who is one of the best humans I have had the fortune of knowing.

Through my journey with Ear Community, I found myself being invited by Dr. Russell Griffiths to talk at his recent Microtia Symposium in Boise, Idaho.  Dr. Griffiths has been a long-time supporter of Ear Community, and we are so grateful for his donations to our organization.  As a parent-advocate, I have a unique perspective in the journey we have taken with Rosalee.  I was able to share how we have taken Rosalee’s lead on what she wants to do about her little ear – our philosophy is that it is her body and she should get a say in what happens as far as surgery goes.  A few years ago she wanted to get a ‘big ear’ but definitely did not want surgery.  I was able to share at the symposium about our experiences with Paul Tanner, an anaplastologist in Salt Lake City who creates prosthetic ears through 3-D printing.

I was fortunate to connect with families in my neck of the woods, as well as from all over the country – there was even a family that had traveled all the way from New Jersey!  I am grateful for the opportunity to share about our journey, about the treasure of information that Ear Community is, and have a special day with other Microtia families.  I must say, Rosalee’s prosthetic ear was a big hit – many families wanted to come and look at it and handle it!  I consider myself so fortunate to be a part of an organization like Ear Community that educates families on all of the options available in a truly unbiased manner.

Thank you to Dr. Griffiths and his team for inviting us out, and allowing me some time to share about Ear Community.  Thank you to Star and Angie for working out any kinks and answering all of my questions.  Thank you to Melissa Tumblin for creating Ear Community and changing my life and my daughter’s life.  Parent and Patient advocates can be such a force for good, and I hope to be able to continue my work in helping other families who are new to this journey.  We are all in this together, we don’t always have the answers, but we are never alone in this path.
– Heidi Jeffs
Events Manager
Ear Community