Imagine yourself in the first few moments of your child’s life, counting tiny fingers and toes and admiring those first innocent cries. Now imagine the emotions that would come with discovering that something is “off” with this innocent life in your arms. When Melissa Tumblin gave birth to her daughter, Ally, she and her husband discovered something unexpected and unseen on any pregnancy scans. Ally was born in 2009 without her right ear, stirring up emotions and bringing up a number of questions between Melissa and her husband. What caused this? Is our baby going to be okay?
Sadly, the Tumblins soon found there was not much information readily available for them regarding their baby’s condition, Microtia and Atresia (missing or underdeveloped ears and absent or underdeveloped ear canals resulting in hearing loss, respectively).
Feeling alone and without answers, Melissa started a Facebook group to see if there were others out there in the same situation seeking comfort and guidance. Within a year, her small support group had over one thousand global followers, and in 2012, she was led to start the Ear Community, a 501(c)(3) nonprofit to advocate and bring light to children and adults born with Microtia and Atresia.
The Ear Community provides emotional support, education about options, resources for IEPs, and financial assistance for hearing devices and surgeries for Microtia and Atresia. In addition, the Ear Community has brought together over 15 thousand people for picnics across the globe, donated over 150 bone-anchored hearing systems (BAHS), and is responsible for founding National Microtia and Atresia Awareness Day, now recognized on November 9.
Melissa is grateful to the organization’s members, as well as those who support the cause.
“I couldn’t do any of this on my own,” she says. “We have picnic hosts in different states and countries who lead events that I cannot attend. We’ve had surgeons and audiologists attend our events who are sources of comfort and knowledge. Also, those who donate to our nonprofit… They’re the reason we’ve been able to do so much.”
In 2019, Ally’s Act was introduced to Congress, which would ensure coverage of BAHS and cochlear implant systems (CI) by private insurance companies for children and adults to age 64, including associated services and costs.
Melissa has, along her journey, helped launch the first all options Microtia and Atresia Clinic at Vanderbilt University Medical Center, and collaborated on the discovery of new genetic information that has led to a better understanding of the chromosome and genes involved with this condition.
“This finding will be life-changing for parents across the globe. There are so many mothers out there who think they ate, drank, or did something during pregnancy that caused this to happen to their children,” said Melissa. “Now we know the cause, which is so important for mothers to know so they do not blame themselves."
A Community to be Thankful For
Here's what a few people are saying about the Ear Community...
- “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.” -Parent, Great Nonprofits Testimonial.
- “I am a registered nurse and have worked in hospitals for the last 45 years. I’ve learned more through your website in the last year than the last 45 years!”-Paul Edward Wafer
- “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
- “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!” -Parent Testimonial