Dr. Mai Thy Truong, Stanford Microtia and Atresia Clinic (California)
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“Ear Community was my saving grace! No better resource than there and Melissa Tumblin is so amazing! I will never forget her calling me when my son was born and making me feel so good! She took my guilt away, and that is was EC strives to do every day!” – Melissa McClellan, Kentucky
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“In all my 30 + years of working with the deaf and hard of hearing, Melissa Tumblin, has been one of the most proactive and inspirational parent advocates for DHOH that I have had the privilege of working with.”
Linda Mustian, Early Intervention speech pathologist (Ally Tumblin’s speech therapist) – Colorado
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Dear Melissa,
I remain deeply touched and overwhelmed by people like you who go beyond their self & immediate blood family to help heal children & families that you do not ever meet. I believe it to be a presence of some very noble and spiritual energies in such persons whose“ cup overflows “ spontaneously & unconditionally. I was so happy to read your collaboration with the research . Equally importantly, taking the conclusions of this research to the parents to provide a “ science based solace “ to them. The mother’s guilt when the child has Microtia is a reality that I see in 100 % of mothers.”
Dr. Ashesh Bhumkar, Bhumkar ENT & Microtia-Atresia Hospital – India
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“Melissa, thank you SO much!! I actually found your website after i posted this on your support group and felt like I had hit the jackpot! there was so much information and I am still going through it all. I finally feel like I am starting to understand some of what we are going through and what action we need to take.”
Emily McConnell (support group member)
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“Melissa Tumblin is an amazing woman and mother who founded EAR COMMUNITY which is a nonprofit organization that offers a warm and supportive community for individuals that were born with deficits of their hearing, in particular, Microtia and Atresia, Hemifacial Microsomia, Treacher Collins Syndrome, Goldenhar syndrome and other degrees of hearing loss.
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“Ear Community has been beyond special to our family. When I thought we were the only one, when I had questions and when my son or I needed support, Ear Community has been there. Melissa is a God send who I am SO lucky to have met. There is a place for Microtia kids and families with EC.” – Parent, Great Nonprofits Testimonial.
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“We appreciate and applaud you for seeing a need and creating an organization that can help those going through some of the same issues you’ve found yourself facing. There’s no one better to lead the way and give hope and guidance than from someone who’s traveled that same path. All our best to you and Ear Community. We hope that you see continued growth and success through your efforts to bring awareness to Microtia and Atresia and to assist those who are most affected by it.” – Nancy Dodge – Omaha, Nebraska
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“Our son was born with BMA. We were consistently looking for specialists who could help us and ways to get our questions answered. We both stopped our late night googling when we found the Ear Community! You gave us those answers and connected us to Dr. Stephan in Nashville!” – Kathryn Spicer, Nashville
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“I am a registered nurse and worked in hospitals for the last 45 years and have learned more through your website in the last year than the last 45 years!”
Paul Edward Wafer – Manhattan Beach, California
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“Ear Community has become such an essential part of care and support for patients and families joining the Microtia Atresia community. Glad to see such amazing support!” – Dr. Siva Chinnadurai, Children’s Minnesota Hospital
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” My daughter was born with microtia and atresia of her left ear. The doctors and nurses weren’t even familiar with her condition and told me to follow up with her pediatrician. Through a quick google search I was able to find “Ear Community” which was a wealth of information and resources. Not only was there so much information it was a non profit the next town over from mine. My daughter is now 5 and we have been able to connect with other families and children with the same condition and learn how we can support our daughter. They have supported crucial legislation for hearing rights and so much more-very grateful to have Ear Community!” – Audra Scott (parent), Lafayette, CO
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“Melissa, It is a joy to hear from you. We go back so many years to where Ally and Connor were just babies. I will never forget that picnic here in Illinois. I will forever be grateful for all your hard work with Ear Community. I always tell people about this mom(you) in Colorado who started a website and organization that has grown to global proportions. Your information was such a gift to Marisa when Connor was born. We are also very proud of Connor and he tells people of his new ear that was his little ear that is still a part of him. We were in Texas the day he gave his presentation. Although we were not able to see the presentation, we went to have lunch with him that day. We had a proud grandparent moment when a number of his classmates kept telling us what a good job he did. I think it is a testament to the awareness he brought when students his age are sharing compliments with us. We will support your work as much as can. Many blessings to you and your beautiful family.” – Josie and Charles Martinez – Texas
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“I just wanted to send you a quick thank you for organizing yesterday’s virtual event. I really didnt know what to expect and was blown away by all the information and guest speakers that joined. Such a wealth of information! I know virtual events are a challenge too but you were so poised and very engaging!I can’t wait for more events in the future. Take care and have a wonderful summer!”
Kelly Weiss – Canada
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“I know that 2020 has been… A LOT. There are so many things happening in our world that seem so out of control which can be anxiety producing for many. However, I would like to shed light on a beautiful organization that has been a lifesaver for myself as well as many families around the world. The Ear Community has been a source of direct information and endless support since the moment we had Amelia.
The founder, Melissa, is a superhero. She helps so many families get what they need to help their children succeed. She advocates not only for her daughter, but for every single person whose life has been impacted by Microtia Atresia and hearing loss. Although I have met her once, I truly do not think I could have been the mother I am (and hope to be) without her and this organization.”
Kristina Kosoglyadov – New York
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“Ear Community is an invaluable resource for everyone wishing to know more about all aspects of Microtia/Atresia. It is sincerely appreciated and well-respected by audiological/medical communities, educators, counselors, and among related professionals. One of Ear Community’s chief priorities is to be a complete resource for families and individuals managing Microtia/Atresia. I have been acquainted with Ear Community for many years. I use them as my GoTo for anything related to Microtia/Atresia. So thankful for this great amazing group doing such important work. So proud of this organizations vision and focus towards helping others. Good leadership is Everything! Congratulations EarCommunity on helping families for a decade!”
Dr. Linda Cox, Audiologist – Florida
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“Hello! I found this organization a few days ago and was immediately contacted by Melissa who made me feel very welcome and introduced me to the world of people just like myself. It’s really been amazing as it had been years since I have given thought to researching microtia. I came to learn about the advancements in surgical procedures and the enhanced hearing devices out there. Melissa was able to get me in to meet with Dr Reinisch and we had a great visit yesterday. This literally took one day! He’s a wonderfully knowledgeable surgeon who created the Medpor Technique. I had never heard of it, as I had the rib cartilage method in 1984 by Dr Burt Brent. Melissa introduced me to a woman my age who lives in Boston, and I’m in Northern California. We spoke for over an hour and I felt like I found my long lost sister! We connected in a very personal way and shared our experiences. I am incredibly grateful to have literally stumbled across the Ear Community and hope to get involved and offer my experience to anyone who would like to connect with me. It feels as though I’ve discovered my long lost family:) A big thank you to Melissa for being responsive and so knowledgeable. I’m grateful to know her and hope to get to know some of you too- Thanks for reading.”
Marilyn Aronowitz, – California
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“I am so happy I took a video of my daughter, Poppy, trying on her Baha 6 for the first time! I want to thank Melissa Tumblin of the Ear Community for reaching out to me a few months ago when I posted about my daughter and was looking for help with our doctor’s (at the time) recommendations. Melissa, all your advice was very helpful for us in getting on the right track with Poppy and getting her to this point! Thank you so much for talking with me over the phone and giving me so much information and answering my questions! Poppy would not have her Baha today without your guidance! Thank you, thank you, thank you!”
Katie Cutchin – FL 2021
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“My husband & I didn’t sleep at all last night. You are such a wealth of knowledge & breath of fresh air. Your kindness is an answer to our prayers & we cannot say thank you enough. Dead end after dead end then in 1 conversation it finally starts to all make sense. We are so excited that our baby boy will finally get a chance at “normal” hearing- thanks to you! Please let me know if you need anything else, but we just wanted to say thank you again. ♥️
Britney Tankersley – Alabama
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“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!”
Robert Valdez – (support group member/Board Member – Colorado)
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Melissa,
“Congratulations on everything you have accomplished to provide invaluable high quality information to families and to advocate for and support individuals born with microtia. Ear Community is a game changer. When families come to us to learn about prosthetic restoration they have often already connected with Ear Community and are armed with information and questions. If families have not heard about Ear Community we immediately provide contact information. I observe a profound sense of relief that they are not alone. I have also noticed young adults born with microtia feeling especially empowered by Ear Community, even though you may not see them at picnics.
Because I have been working with families of children with microtia for over 3 decades I see the profound difference you have made. Before Ear Community, families would come to our office to learn about prosthetic restoration and would often not know the term microtia. Parents would express feeling very alone–that their child was the only person born with this difference.
I am a firm believer that people make better decisions when they have good information and understand their options. I am grateful for Ear Community and think you and Ally are amazing!”
Julie Jordan Brown, MAMS, CCA – Medical Art Resources, Inc. – Wisconsin, United States
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“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.”
Colleen (support group member – United States)
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“As most other parents of a child born with Microtia Atresia we were clueless when she was born as were the doctors and nurses we came in contact with. I found out about Ear Community (EC) while searching online and it has been a wonderful experience for us. Many parents feel like they are on an island and Ear Community has made us and our daughter realize there are children all over the world like her. EC hosts picnics internationally as well as in the US, educates medical professionals and advocates for our children. Working with hearing device manufacturers, we are able to donate hearing aids to need-based children worldwide. Without this organization, parents would have to spend countless hours searching for answers that aren’t readily available.
Our founder, Melissa, works tirelessly to grow the organization while searching for funding. While Ear Community may not be as well know as other causes, it is vital to parents and any size donation will have an amazing impact on our children.”
Scott Newcomb – (support group member/Board Member – Colorado)
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“Your work for the microtia kids and families is tremendous that can not be put into words.”
– Dr. Muhammed Arslan (Pakistan)
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“What started with the need to assist one person through insecurities and fear of the unknown, had now escalated into a world filled with love, gratitude and camaraderie. It’s all about O’hana. It’s all about family. In MASG_Mal, no one gets left behind. Thank you Melissa Puleo Tumblin, for that beacon of light that allowed us on the other side of the world to follow suit. Giving, is indeed greater than receiving. xxx”
Sue Yoseff – (support group member – Philippines)
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Melissa,
“This is really neat. You’ve done so much over the past ten years. I remember where I was when I was on the phone with you when you told me that you were starting a non-profit and I thought you were crazy! I only thought you were crazy because I started a non-profit a few years previously and it was too much work so I closed it after 3 years. But after 10 years, you are stronger than ever! You have to be crazy to make a difference in the world : ) Thanks for all you do for all the families.
Paul Tanner , Anaplastologist – Utah, United States
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“We LOVE Ear Community! The information has been awesome, we went to a picnic and I was brought to tears to see other children just like my little girl. This organization is a godsend and I am so glad to have found it!”
Writer – (support group member – United States)
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“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!”
Melissa Shemanski – (support group member/Board Member – Indiana)
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“he day my son was born we learned he had bilateral Microtia/ Atresia. Since then I found the Ear Community online/ Facebook and I sent a message seeking advice not knowing what to expect or what to do next. The founder (Melissa Tumblin) sent me a long reply with tons of information, what to expect, what specialist I should set appointments with and most important of all gave us hope and encouragement to be the best advocates for my son now (4 months old). I’m so grateful I found this organization early on to get the resources, support and peace of mind we needed. They’ve been a Godsend.”
Viviana G. (support group member – Texas)
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“My 3yr old daughter Lily has unilateral Microtia and Atresia of the right ear. I found your organization on the internet after she was fitted with her softband at 6 months and I just wanted you to know it has been an absolute blessing to me and my daughter! Being able to share and read other families trials, successes, and experiences has made all the difference in the world when often times we feel so alone or that others around us do not understand. I was able to attend the Nashville conference and family picnic thanks to you and this foundations efforts so again THANK YOU! It was such a wonderful, educational, eye opening experience.”
Jen Haley – (support group member – Ohio)
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“Microtia is lonely! My now 9 year old grandson felt so sadly unique until this organization and your work have made it recognizable. The first books and the first Microtia day made him feel part of a community! And finding support means so much to me. If there is anything I can do, please let me know. Awareness is so tough when only a few ( by the numbers) are afflicted. I had no idea until Easton was born.”
Love your work and dedication!”
Leonita Sianez – (Support group member – California)
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Shannon Katuszonek ( support group member – California)
Kevin McKay (support group member – Maryland)
Kristy Smith (support group member – Arizona)
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“You have no idea how much your group, website and information means to us and I want to personally thank you for all that you do! My family just wanted to give you and your team the biggest of thanks for this past weekend’s family picnic in Orlando! Not only did the girls have a great time with all the activities and food, my wife and I found it very informative and well worth the time. our daughter loved wearing her “Microtia Kids Rock” t-shirt so much we had to wash it right away so she could wear it to school the next day. Thank you!”
Mark and Lisa Dresbach Johnson (support group members – Florida)
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“I wanted to thank you for not only answering my questions that i have regarding my daughter but providing me with more information and solutions for children with Microtia/Artesia.When Kimora and I arrived at your picnic this past summer i was very pleased and finally comfortable. My daughter finally got to play with children that had the same conditions as her. I loved all the information that was given to me that day. For the first time my daughter got to play like a normal child and did not have to worry about other people starring at her ear. Once again, thank you for creating this page and Ear Community and having your wonderful picnics. See you next summer!!”
Bliss Holland (support group member – Colorado)
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“I wanted to take the time to say how wonderful both the Ear Community and the Microtia and Atersia Community Support groups are. In addition, they have been extremely helpful, informative, as well as comforting. I really want to thank you for the amazing job you do and all the hope you bring!”
Lorryn Ruiz, (support group member – New Jersey)
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“What Melissa is doing with Ear Community will revolutionize how the world thinks about Microtia and Atresia in the future. What Melissa has done is just incredible. I applaud her efforts and what she is doing for the Microtia and Atresia community. Thank you for your commitment to these families and to medical professionals everywhere.”
Dr. John Reinisch, M.D. (Microtia Medpor reconstructive surgeon – California)
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“Melissa- I say it time and again, I don’t know what I would have done if it wasn’t for the Ear Community. I found out that my daughter had atresia at 2am in the hospital two days after giving birth and w/out my husband by my side (he went home to get rest). Up all night on the internet trying to figure out why and what it meant that she was missing her ear canal. I stumbled upon Ear Community and I am so thankful I did!!! This got me through such a difficult time! Thank you a million times again! It was so amazing to meet you at the Ear Community picnic! I know I cried when I met you, but after my daughter was born, I would feel so sad and then go to your website (every night) and it would make me feel better. Thank you, thank you Melissa!”
Melissa Dubno Geller (support group member – Connecticut)
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“When Hud was born, a few hours later when he was peacefully sleeping and I was recovering from surgery, I googled “baby born with little ear” to try to learn about his condition. Ear Community was the first resource I found that taught me what microtia atresia is- words that I had never before heard. I love supporting this organization that both educates the public and provides hearing aids to impoverished children.”
Aja Mulford – (support group member – California)
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“The Ear Community family and nonprofit has transformed the way parents who have children with microtia and atresia communicate with each other. Ear Community offers extremely informative and unbiased options for families seeking help. I am honored to be on the advisory board.”
Dr. Arturo Bonilla, M.D. (Microtia rib graft reconstructive surgeon – Texas)
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“Ear Community’s website provided me with helpful articles related to different surgery procedures, new technologies, and advocacy information. Furthermore I was able to connect with others who were blessed with Microtia all over the world. I accepted and was comfortable with living with Microtia and started reaching out to others through Facebook on the Ear Community page. This led to group discussions and empowerment for myself and to others. If I would have never gone to the Ear Community’s picnic in Columbus, Ohio surrounded by my Microtia peers I may have never had the courage to have the surgery. My experience at this group event changed my life for the better and was very memorable.”
Camilla Gilbert, (Ear Community Board of Directors member – Ohio)
_____________________________________”Thank you again for starting Ear Community. I am so incredibly impressed by how quickly Ear Community and your support group have grown and how valuable they have quickly become to so many families around the WORLD! I can’t imagine how hard you have worked and I hope it feels rewarding to you. Thank you for creating such an open and accepting, supportive, and helpful community. I know you receive many thanks from families, physicians, etc., but thank you for all that you do Melissa.”
Megan Thomas (anaplastologist – Wisconsin)
_____________________________________“I am so excited to find this site! I was looking for CEU courses on Audiology Online and Poof, there you were! My son has unilateral microtia and atresia. He loves his “Nemo Ear.” It is so refreshing to speak with another mother who has a child with M/A and can understand personally and professionally where I am coming from.”
Dr. Summer Heard, Au. D. (audiologist – Alabama)
_____________________________________”I whole heartedly endorse the Ear Community as a warm and supportive community for individuals who were born with Microtia and Atresia and hearing loss. All Audiologists should consider making the Ear Community website the “Go To” place for a support community for individuals and families regarding their options for managing hearing loss and minimizing its negative impact on daily life through technology and/or reconstructive surgical options.”
Dr. Linda Cox, Au.D., CED (audiologist and teacher of the deaf – Florida)
_____________________________________“Ear Community founded by Melissa Tumblin fills a large whole in the body of information that is currently available to individuals with Microtia, young or old. Real experiences and feelings, shared by patients or families faced with the same decisions about treatments or by others who already live with the outcome of a particular treatement provide that additional dimension that helps make a more comfortable well-informed decision.“
Greg Gion, MMS, CCA (anaplastologist – Wisconsin)
_____________________________________“Words of Wisdom…Ear Community is just that – a community of patients, families, and advocates for children and adults alike with microtia/atresia. It is a valuable online resource putting patients and families together – both virtually and physically – to discuss experiences, joys, disappointments, options, and technologies in the arenas of hearing rehabilitation, microtia surgery, and atresia repair. Thank you, thank you for providing this support to families. It is through sites like yours and people like you that families get accurate and important information about how best to take care of their little loved ones. My sincere appreciation to you for what you have done.”
Dr. Bradly Kesser, M.D. (Otologist/Neurotologist/ENT – Virginia)
_____________________________________”Prior to the development of the Ear Community website, it was a very difficult process for someone with Microtia/Atresia or their loved ones to become educated about all of the issues and options surrounding this condition. The Ear Community took on that challenge in a thoughtful and all-inclusive way to create a true online community providing support and education to fill the large void that currently exists in the medical community with respect to information about Microtia and Atresia.”
Dr. Sheryl Lewin, M.D. (Microtia Medpor/Su Por reconstructive surgeon – California)
_____________________________________“Parents and patients are almost always faced with a need to efficiently gather accurate facts in treatment decision making regarding A-M. Fortunately for all of us, new options are available and will continue to emerge for years. Ear Community is a wonderful place to discuss ideas, experiences and options with other parents and patients undergoing treatment – a valuable and wonderful resource for you.”
Dr. Joseph Roberson, M.D. (Otologist/Neurotologist/ENT – California)
_____________________________________“Ear Community is a one-of-a-kind resource that empowers families and gives professionals insight into the patient and family journeys and the psychosocial impact of microtia/atresia. Fueled by the limitless passion and enthusiasm of its founder, Melissa Tumblin, Ear Community advances our collective understanding of microtia/atresia to help ensure the best possible outcomes for each individual.”
Dr. Carolyn Smaka, Au. D. (audiologist – Texas)
_____________________________________”We believe in Ear Community and the blessing that you, Melissa, have been personally to our family.”
Jenni Hartley Sheneman (son, Tray, is a hearing device recipient through Ear Community – Georgia)
Microtia and Atresia Support Group on Facebook
- Agnieszka Kruk-Popielarska, support support group member – Poland
“Hello Melissa, wow. I’ve never been so touched. This is the first time I’ve ever gotten a response from someone let alone a website. I have joined hundreds of groups only to be disappointed and quitting countless accounts. I really do appreciate the fact that you did all of this. Words can’t explain how I feel right now. Someone actually heard my cry for help. I will definitely connect to the new forum. Thank you!”
- J. Rivera, support support group member
“She was a year old when my daughter was born and i discovered this page. The photos and stories you shared of her gave me so much hope and courage to get through all the unknowns. My little one turns 8 next month and she’s thriving in every way. Thank you for giving me such comfort during those hard days. I’ll be forever grateful for this page. Happy birthday, sweet girl! You are inspiring us all.
- Anna Quesada, support group member
“Thank you for letting me know that others are like me. It took me 62 years. Thank you, Thank you, Thank you
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- Ellen Weaver-Loop, support group member
“My daughter is 3 1/2years old and for the first time today I feel like we have direction and are getting somewhere with her microtia and atresia. This is all thanks to this group and Ear Community. Melissa, thank you for all the long hours and hard work you put into this. Today Sophia was fitted for a soft band Baha which we weren’t informed was an option until I read about it on here. I was also able to get in touch with a lady at Shriners Hospital in Chicago who made us feel very hopeful about having medpor surgery done which again I did not know about medpor until visiting Ear Community. And, to top it all off, we had the pleasure of having met a lilttle girl with artesia through this site. Jennifer Barr and Melanie have been a blessing!!
With a very thankful heart!”
- Melissa Parish Shemanski, support group member
“Dear Mrs. Tumblin, I have dedicated my professional life to caring for children with congenital differences, and am impressed not only with your devoted care for your daughter, but with your sincere and dedicated commitment to help other children with microtia-atresia and their families. Your wonderful attitude that a child with microtia-atresia can grow up to be anything that she or he wishes to accomplish is spot on. I have taken care of children who have become professional singers, one who even sings opera; others who are scientists; teachers; engineers; an archeologist; and just about anything you can imagine. Again, I appreciate your interest not only in seeking the best care for your daughter, but to your commitment to realistically educating and helping many other families.”
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Dr. Burt Brent, (Rib Graft surgeon and pioneer of the “Brent” surgical technique – California).
“Hi Melissa! This group has helped me tremendously. It has given me a ton of info and resources for what lies ahead for my child, Jake. But I think the thing I’ve gained the most at this point has been emotional relief. There are times when I worry about Jake so much and I just cry because it’s not fair. When I feel like that, I immediately visit this page. Even if I don’t post anything, I just click on this page and realize that I am not the only one. It really helps.”
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Val Fisher, support group member – Pennsylvania
“Im so happy that i found this page. I thought there was no one like me that was born with Microtia. I ALWAYS wanted to meet people just like me. For many years up until my age now (33) in Columbia SC I thought that I was alone and it was no one like me was born with what i was born with. I dont have much anger but I am frustrated with what i have going on and thats hearing. I thank you for this page ♥”
Angela Brannon (support group member)
“Hi Melissa, It was great to hear from you. You have been so busy helping people in such a valuable way. I’m so proud to know you and to watch you become so instrumental in the lives of so many families across America and the world. I hope you are at least half as proud of yourself as I am of you. Your Facebook page is amazing! From time to time I have visited it and have also referred a couple of families to your page. It is so inspiring to see how many lives you have touched. Thank you also for the kind words you shared at the Hands and Voices Gala. I’m not sure I’m worthy of such high regards, but thank you. I hope everything else in your life is going well. Take good care of yourself! Your mission is very important to the world.” Until the next time, Cheryl.
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Dr. Cheryl Johnson, PhD, Colorado Audiolgist
“My daughter is 3 1/2years old and for the first time today I feel like we have direction and are getting somewhere with her microtia and atresia. This is all thanks to this group and Ear Community. Melissa, thank you for all the long hours and hard work you put into this. Today Sophia was fitted for a soft band Baha which we weren’t informed was an option until I read about it on here. I was also able to get in touch with a lady at Shriners Hospital in Chicago who made us feel very hopeful about having medpor surgery done which again I did not know about medpor until visiting Ear Community. And, to top it all off, we had the pleasure of having met a lilttle girl with artesia through this site. Jennifer Barr and Melanie have been a blessing!!
With a very thankful heart!”
- Melissa Parish Shemanski, support group member
“This group has been an amazing resource. Both through the knowledge gained and the people I’ve connected with. Since Sebastian is only 2 months old, I still have time to decide on our reconstruction route, but I visit the forum page often especially before his Dr. appointments to make sure I know all I can know. I’ve already been told by several Dr’s that I know everything they were planning to tell me (in part due to our oldest daughter with BLM, but mostly from the information from this page). And, thanks to you, Melissa, Sebastian is getting a “loaner” hearing aid tomorrow, and should be approved to have funding from the county pay for his permanent one. (since we don’t qualify for medicaid and insurance doesn’t cover it). Without reading your information, we probably would have just paid out of pocket! So, thank you thank you thank you! You’ve provided an invaluable resource for parents and these wonderful children of ours!”
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Amy Gile, support group member – California
“My son was born with a defect of his left ear called Microtia-Atresia. So, long story short, I read a publication that I get through the mail every month called “Hands and Voices Communicator”. It’s kind of a little newsletter for members of the Deaf and Hard of Hearing community in my area. It’s cool… but usually there’s not a lot in there that applies to me and my family. This month though, there happened to be a cool little article about Microtia-Atresia, and falling through the medical “cracks”. Yes! Finally, connection! Someone else, in WRITING, actively talking about it! AND she had a Facebook group! Yes! So I joined, and was immediately welcomed, and given advice… and have tons and tons of articles to read through just waiting for me in the group… all within the first 24 hours. Awesome. :)”
- Lanine and Sandra of The Prism Dragon website
“Hi Melissa, I am so impressed with all of the research that you have done. What a wonderful tool for parents, doctors, students and families. You have made and will continue to make a huge impact on the world. Keep up the great work. Thanks for sharing with me.”
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Dr. Carole A. Christensen, Ob/GYN – Colorado
“Hi Melissa, I just wanted to take this opportunity to thank you for everything you have done for not only myself but for other people and parents with Microtia and Atresia. It is really inspiring and has inspired me so much to do as much as I can to raise awareness and support for Microtia and Atresia. Also, I wanted to thank you for accepting me on your support page. You have taught me a lot about Microtia which I never knew before and have really opened my eyes. You were the first person I’ve had contact with and your support was the first one I came across so you were the one that helped me to become a more confident person and start feeling ok about myself and helped me to turn my life around for the better as I’d just come out of a lot of bullying since starting juniors which was pretty much continuous through secondary school for me and I had felt very sad at times in my life. A couple years back all of this had totally knocked all of my self esteem, self belief and my confidence, but you have helped to rebuild this in me and I will be forever grateful for that. You are a truly amazing woman and I love hearing about your experiences with Microtia and Atresia with your gorgeous daughter, Ally. You really are inspiring. You have helped me to know what I want to be aiming for in life and the things I want to achieve. Thank you.”
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Bethan Harvey, support group member – England, UK
“I had found this group through Melissa’s invite about 3 months ago. Ever since, I have been blessed to meet some awesome people through this group. My daughter, Emma, 6 years old, had her corrective Medpor surgeries within these few months and I had received much of supportive encouragements as well as comforts through it all from some of you, thanks! Before this group, I felt alone in this and didn’t seem to have anyone to relate to and to share the common concerns. I used to belong to some other Microtia group which was much larger and the only things I got from it was great infos, but never this personal of a connection. This group truly amazed me by the friendliness and the warm gatherings. Actually, a few of the people now are also becoming good friends of mine. Thank you for allowing us to be part of you! love, Nina and Emma : )”
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Sarinah Tran, support group member
“Hi Melissa, I think what you have accomplished and continue to do is just amazing! Keep up the incredible work. All the best, Sheryl”
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Dr. Sheryl Lewin, Medpor Ear Reconstructive Surgeon
“I would have been lost. We adopted our son who was medically fragile. We were so busy caring with his other issues, that researching his microtia and atresia was just too overwhelming. To have others answer my questions as well as have quick access to information has been a heaven send.”
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Julie Winterton, support group member
“Hi Melissa, Thank you for the response. As a matter of fact, the main reason I e-mailed you was because I respect what you have done with your Facebook Microtia site so much. I see how passionate you are about everything you are doing and I deeply respect that. I feel that this is going to be the gold standard for parents [and individuals] with Microtia, your site is different. I know that you are monitoring it and I appreciate the time you are putting into it. Your Microtia Facebook site is a breath of fresh air and is extremely well organized and informative. Keep up the wonderful work and please let me know if there is anything I can do to help. You are very inspirational to so many people. I would love to embrace your support group. Also, I did see the nice comments a few days ago and it was very humbling.” Thank you again, Dr. Bonilla
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Dr. Arturo Bonilla, Rib Graft Ear Reconstructive Surgeon
“We also adopted our new born daughter and never heard of M&A. We did some looking and found this awesome site right on FB. Melissa has been there and has always helped us out with quick responses and finding out information for us if need be. This site is so informative and Melissa is building it bigger and bigger every day it seems. I would like to personally thank her for all her willingness to help and support all of us who are clueless or just need information or someone to help explain info or terms. I applaud your willingness to help others and love being able to ask or talk about our kids to others in the same situation. Kudos to you Melissa. Thx again.”
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Michael Giovengo, support group member
“I’ve learned so much from the group since my daughter, Eden, was born with RMA in September (2010). My first reaction when she was born was panic and shock, but within hours I found the group and starting talking with Melissa. I still find myself being real protective and a little insecure around people that haven’t met Eden, but this group has given me such a great perspective. The most important thing though is all of the important research that has already been done for me. I’ve spent hours reading and researching different options that are available for Eden, and everything is right here for me in this group. At our first ENT visit ‘the best’ doctor in Omaha wasn’t going to mention a BAHA until I brought it up. Eden is being fitted for her first BAHA in 2 weeks. He also told me that Atresia repair surgery would not help with her hearing, and he suggested that we don’t pursue it. If it wasn’t for this group I most likely would have taken his ‘expert’ opinion as a fact. I absolutely love reading about other parents who are going through the reconstruction process. This group has done more for my acceptance and understanding of our situation than anything the doctors and nurses could have ever taught me. I can’t wait until we’re at the point that we’re able to make a decision about what surgeries and procedures are best for Eden. For now though, I look forward to reading more wonderful stories and learning everything I can so when our time comes I will be confident we’re making the right decision for our beautiful little girl!!”
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Jay Kathol, support group member
“Ten years I have been Googling Microtia and you finally came up!!! thank you Melissa!!!”
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Joanne DiMicelli, support group member
“Hi Melissa, Ronnie forwarded me the article you wrote and the website for patients and families with Microtia/Atresia. Thank you, thank you for providing this support to families. It is through sites like yours and people like you that families get accurate and important information about how best to take care of their little loved ones. My sincere appreciation to you for what you have done – and you have beautiful children!” Dr. Kesser
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Dr. Brad Kesser, Canalplasty/Atresia Repair Surgeon
“Unfortunately, we were unaware of the Facebook site until after Manny’s combined microtia/atresia surgeries. In fact, Dr Sheryl Lewin is the one who told us about it and said she thought it was a great resource. While I was able to connect with some families prior to surgeries, I felt somewhat alone and lost in the overwhelming journey and surgery preparations. The Facebook site would have been extremely helpful prior to surgery, but it is still very helpful now, post surgeries. I have since then spread the word to other microtia/atresia families I am connected with. The information is well-organized and non-biased. A huge thank you to Melissa!”
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Tiffany Wilke, support group member
“I would like to encourage everyone to join this Microtia and Atresia Support Group. My wife and I use it everyday. It definitely reduces our stress and anxiety to see that other couples are going through similar things and how they handle them…we can all learn from each other and try to give our kids the best available options. From medical articles to insurance coverage…it’s all there! Thank you Melissa, so much for starting the group. It gave us much needed hope for the path ahead!”
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Anonymous, support group member
“Hi Melissa, just a note to say that thanks to your FB group, I have conducted research on advancements in technology since I last saw anyone regarding my own experience. I came across a specialist here in Calgary, Alberta who examined me and learned, in spite of believing for my entire life that I was deaf in my left ear, there may now be a possibility of hearing! There is more testing required, and will require the BAHA. I am not sure what will come of this, but I wanted to say thank you for providing such valuable information on this site. I am still in shock over this news, and can only imagine how life changing this can be for others!”
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Angela Park, support group member
“I have learned so much since joining the FB page…And I just want to say thank you for all the time and effort you have put in to keeping everyone up to date. You are a real angel.”
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Ilana Grotius, support group member
“My name is Vera and I have a 4 months old baby boy Jayden with Microtia/(maybe Atresia?). We still got a long journey before Jayden’s surgery so I am so appreciative of all your researches and commitment in this topic. What you are doing is truly a “public good”. Thank you!”
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Vera Liang, support group member
“We are about 4 almost 5 months post op from Medpor reconstruction. …We wish we would have done it sooner, but I didn’t know that there were options out there till I found this group. I thought the only option was the rib graft and the multiple surgeries at an older age. We were waiting till he got old enough to do that, but it was effecting him psychologically. He was very shy and introverted. Now that he has this new Medpor ear, he is a changed boy for the better. He is talking and no longer shy. He shows off now and before he would’ve hidden his face. Believe me, this ear has made all the difference in the world for him! Good luck in your decision, I know it’s a tough one to make.” Thank you Melissa!”
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Jenny Middlebrooks, support group member
“Hi Melissa, Just wanted to let you know this group has already helped me!! My daughter Nicole is 9 and having surgery with Dr. Thorne in January. Through this group I was able to ask another Mom that used him some questions and see a before and after picture that I desperately wanted to see. Great job Melissa and thanks everyone!!!”
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Ginny Wallace, support group member
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