Neguse introduces national awareness day inspired by Broomfield girl [Daily Camera, Boulder, Colo.]

Nov. 20—Melissa Tumblin longs for the day that people with microtia and atresia are treated just like anyone else.

Melissa's daughter Ally was born without a right ear and uses a bone-anchored hearing aid to hear. For more than a decade, Melissa has dedicated her life to advocating for the hearing community. After Ally wrote a letter to Rep. Joe Neguse, D-Lafayette, talking about her hearing device and how it's not covered by insurance, Neguse introduced legislation titled "Ally's Act" in Congress, which would ensure private insurance companies provide coverage for osseointegrated hearing devices, or OIDs, including bone anchored hearing aids and cochlear implants.

While the legislation is still working through Congress, 12-year-old Ally and Melissa haven't stopped advocating for awareness for the hearing community.

Now, the mother-daughter duo is advocating to make Nov. 9 National Microtia and Atresia Awareness Day, and on Nov. 9 Neguse introduced a resolution in Congress to designate the day. Melissa had previously registered Nov. 9 as National Microtia Awareness Day, recognizing individuals born with one or both ears missing or when the outer ear doesn't fully develop. She now wants to include atresia in the awareness day, to recognize individuals born without an ear canal or underdeveloped ear canal. Microtia is often accompanied by atresia and affects an estimated one in 6,000 births.

"I had reached out to Congressman Neguse and I said, 'I would really like to make this awareness day more complete. ... Would you be willing to declare it as a lawmaker?'" Melissa recalled. "And he said absolutely. He knows all about the community."

The resolution was introduced by Neguse, Rep. David McKinley and Sens. Elizabeth Warren and Shelley Moore Capito.

"I'm honored to introduce this resolution in Congress, and to build on the advocacy and passion that my constituents Ally and Melissa have been growing in Colorado," Neguse stated in a news release. "Ally's bravery and ingenuity to write our office and share the idea behind 'Ally's Act' has begun a movement in Congress to expand access to specialized hearing devices and support individuals with microtia and aural atresia. This resolution, establishing Nov. 9 as National Microtia and Atresia Awareness Day will continue to build awareness and help more families to leave the hospital equipped with answers for navigating these health conditions."

McKinley is the only member of Congress who has a cochlear implant, Melissa said, which is another type of hearing device.

"Supporting a resolution designating National Microtia and Atresia Awareness Day serves to benefit the children and adults with this congenital anomaly, along with their loved ones and caretakers," McKinley said in the release.

The resolution is supported by more than 50 groups across the country.

"We wanted to make this day more complete," Melissa said Thursday. "We're very excited. We just got the bill number assigned."

Warren stated in the news release, "Misinformation or the lack of information about microtia and aural atresia leave far too many Americans behind. That's why I'm glad to introduce this resolution to raise awareness of microtia and aural atresia, and advocate for the community of children and adults who are affected by these health conditions so that every individual with microtia and aural atresia can flourish."

On National Microtia Day in the past, Melissa said parents of kids with microtia would create a presentation for students in their child's class. It gives the kids a chance to stand in front of their class and explain their ear and hearing loss, she said.

"A lot of kids, it gives them the opportunity to embrace their differences and feel a little more confident, because they're always asked questions about it," she said. "A lot of these kids, they endure public stares. Classmates are often curious, and they can be mean. When kids have an opportunity and can say, 'This is the way I was born. I was missing an ear or both ears, and that's the reason for my crooked smile,' it just helps neutralize it."

While the legislation is hard for a 12-year-old to comprehend, Ally is hopeful it will lead to a greater understanding of the conditions.

"National Microtia and Atresia Awareness Day helps kids and adults like me know they are not alone," she said. "Everyone is beautiful in their own way."

Melissa said she chose to have the national awareness day on the ninth because the number nine is shaped like an ear.

"Our community deserves to have a day," Melissa said. "These days are very important for their causes because it not only brings awareness to the public, but it also goes to show the support with research options and resources."

Melissa is the founder of the nonprofit Ear Community, which started out as a support group in 2010. Through the nonprofit, Melissa said she's helped thousands of children and adults born with microtia and atresia around the world. For more information, visit earcommunity.org.

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