Amazing people and amazing network of volunteers! They helped me in my time of need and I am forever grateful! I help and donate what I can!
The Ear Community and it's creator, Melissa Tumblin, have truly been a lifesaver for my family from the very beginning of our journey with a child with Microtia and Atresia. Our daughter was diagnosed with right-sided Microtia and Atresia at birth and our pediatrician had very little to no knowledge about her condition. The emotional roller coaster that accompanied specialist appointments, and navigating the very scary territory of figuring out how to raise our special needs daughter, was greatly calmed once I reached out to the Ear Community for help. I searched the website and found so much helpful information that I wished I had found earlier. Not only was I better able to understand my daughter's condition better but I was able to connect with other parents of kids with Microtia and create great supportive friendships that have latter over the years. The Ear Community also holds numerous picnics over the summer in a variety of locations to help gather families and people effected by Microtia, Atresia and other facial deformities and syndromes. These picnics allowed us to talk to specialists and learn the latest procedures available as well as try out devices and talk to people to find out about their experiences. I cannot express how incredibly wonderful and helpful these picnics are to attend. My daughter LOVES meeting other people with a BAHA and little ear like hers. The Ear Community also provided my daughter with a new hearing device last year and words cannot express how grateful we are for the generosity that the Ear Community has shown us. We will forever be grateful for the comfort and knowledge we received from this wonderful site and Melissa personally.
Ear Community is such a fantastic organization. They offer support, resources, and information and provide a community to feel a part of. We are so thankful to have the Ear Community to rely on.
We love the Ear Community!!!!! ❤️❤️❤️
So thankful for an amazing group that is so full of support and information for the Microtia/Atresia community.
Thank you for all that you do!! ❤️
Ear Community is the best resource for anyone with Microtia and Atresia. When my son was born the Doctors didn't even know what was wrong with my sons ear. I spent countless hours that night in the hospital researching why it could be. That is when I found Ear Community. No better resource nor support group out there! The work they do with hearing device donations is amazing! Th support provided by the organization from advice to moral support is unheard of these days! I wish more people would step up and help this organization with donations so they can continue to help others!
My daughter Sophia was born with bilateral microtia and atresia. When she was first born we were confused and had no answers on where to turn and directions on our next steps. When Sophia was 3 months old we saw an ent and learned what her birth defect was called. After learning the name we googled it and stumbled upon ear communities website. Honestly, we did not realize how life changing finding ear community would be for Sophia on her microtia journey. We have a great ENT but there was still information and options we were unaware of until we found ear community. Ear community is where we found out about the cochlear BAHA soft band that allowed Sophia to hear in her right ear. This sight is also where my daughter has found life long friends who are on their own microtia journey. I could go on and on. The founder of ear community has poured her time, energy, and heart into helping families and individuals with microtia in every way possible. For that we are forever grateful!
My son was born with right sided Microtia & Atresia grade 3. He was baby number 3 for us! So never in my wildest dreams did I think my son would be born with a birth defect since my other 2 were born perfectly healthy. When he was born the Doctor’s hand was covering his little ear and when she placed him on my chest, it was little ear down. So for about 30 minutes or so we had no idea he was born with a fairly rare ear abnormality. When I flipped him over to get a good look at his cute chubby little face I noticed his ear was folded over….I thought nothing of it being my 3rd child because I know newborns cartilage is very thin. I tried unfolding it, but I couldn’t and it was then I realized something was not right. I asked both nurses in the room what it was & they stated they’ve seen this before- but did not know the medical terminology. I frantically looked at his fingers and toes to make sure there were 10 & thankfully there were.
I spent the next 12 hours in fear and tears wondering what I could have done to cause this. Ultimately, blaming myself…could it be the flu shot I got, could it have been the few drinks I had PRIOR to knowing I was pregnant, could it have been stress, food??? I wanted to google it so bad because I am the “Google Queen” says my husband- but he told me not to. He said I shouldn’t scare myself and I should wait for the doctor to come in and give the diagnosis. As soon as I got home I googled his diagnosis and found the wonderful Ear Community! Hands down the best google search ever! :)
I reached out to Melissa via Facebook messenger in hopes she could in some way ease my fears and worries and that is exactly what she did! She was kind enough to call me that same night. I’ll never forget that conversation. Melissa told me her story about her beautiful daughter Ally and how she blamed herself at one point which most mothers do in the beginning. I thought that was so kind of her. I knew right then and there this was a special organization.
For the next 6 months to a year I religiously followed every single post on Ear Community. It helped me get though my post-partum depression and lead me to realize even though my family and I have never met anyone with Microtia/Atresia, we were not alone and it wasn’t as rare as the doctors made it out to be. I was able to ask questions for all my sons future doctor’s appointments (there were a lot) & everyone was so responsive & supportive. When he got his BAHA at 3 months I couldn’t wait to share it with the group! How cool is that? I was able to feel proud after months of blaming myself. This organization is truly a gem! Ear Community is a support group of everyday parents just trying to raise their kids the best they can and it’s so nice that no matter your view on surgery or aiding your child is we can all relate and support each other no matter what and that is pretty special!
I also want to mention a very special family we connected with thanks to EC, The Bayan’s have become family to us and our boys will grow up together knowing they are not alone just as Christine and I did. So thank you Ear Community for the endless support and love!
My daughter, Eden, was born on September 19, 2010. The first time I saw her the nurses were around her and I said light-heartedly, "does she have 10 fingers and toes". The nurses assured me that she did, but they showed me that her ear was folded over. I had absolutely no idea what had happened and I had never seen or heard of a child being born with an undeveloped ear. I went back to our hospital room shortly after and starting researching on the Internet. Within an hour of Eden's birth I found the Facebook support page that evolved into Ear Community, and I was talking on the phone with Melissa. I've relied heavily on Ear Community the last five years while making decisions for my daughter. She is scheduled to have surgery on July 29. Without this group and the support and advice that I have received I would have been far less educated and confident moving forward with Eden's surgery next month. I can't thank Melissa and all of the members of this group enough for sharing their knowledge, experiences and stories with me. Eden and I are very fortunate to have found this group so quickly. Thank you, Ear Community!
Ear Community is a great resource for people with the fairly rare condition of microtia and Artesia to get information that is hard to find, even from doctors, and even better...it's all on one website! The website also has tons of useful information for many others with hearing loss and craniofacial abnormalities. It's also a great way to meet people who understand what I go through and share support. They also do a great job of housing summer picnics around the world (although mainly U.S. since that's where they are located and have the most volunteers). I've been attending them for three years, and it's always a great opportunity!
Ear Community was there when my family needed it most. We found Ear Community when my son born with Bilaterl Atresia Microtia and was about 3 months old. Ear Community provided the education, resources and the community we needed to filter through the medical journey of this diagnosis. It was fantastic to speak to other families who had walked our shoes, used our surgeon, used the same hearing aides, worked with insurance companies for approval, navigated through the educational needs of our child and were the encouragement we needed as questions arose.
I love that Ear Community is there for those who are unable to obtain aides...the leadership is fully invested and responsible. I love this organization.