Melissa and James M. were shocked to learn their little boy, Jamison, was born with left-sided microtia and atresia—a condition affecting the development of his outer ear. Although it was a scary time, they leapt into action, ensuring he had access to sound early with the Cochlear™ Baha® Sound Processor with Softband and seeking support through the Ear Community. The 2018 Ear Community Picnics are on their calendar and they want you to join in on the fun.

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When Melissa and James M. first met their baby boy, Jamison, they were surprised to find out he had a condition called microtia and atresia. His left ear didn’t fully develop during the first trimester of pregnancy, which impacted his ear canal and left him deaf in that ear.

My husband was probably the most devastated in the delivery room, recalled Melissa. I knew everyone was whispering, but I just didn’t know why. In the beginning, I just wanted it ‘fixed.’

Melissa and James acted fast when it came to their son’s hearing. They knew giving him access to sound as early as possible was key to him developing language on par with his hearing peers. With the help of their amazing audiologist in Louisville, they chose the Cochlear™ Baha® Sound Processor with Softband to kick off his hearing journey.

Over the years, my wants for [Jamison] have changed. Now I just want him to be happy, fun-loving and confident.

Finding Ear Community

Ear Community is a non-profit that provides support, resources, information and guidance to families around the world who are living with microtia and atresia, hemifacial macrosomia, Treacher Collins Syndrome and Goldenhar Syndrome.

My biggest treasure, other than Jamison, was finding the Ear Community. We finally found a place we belonged, that felt like home. Without its support and all the amazing friends I have met through the Ear Community, our journey would not have been the amazing journey it has been.

I feel like having a community that truly knows your trials, tribulations, ups, downs and struggles makes the days a lot easier.

My advice for families is to find that place where others are truly walking in their shoes. No one can understand the grief, the worry, the sadness and the happiness each parent feels unless they have felt it personally.

I truly believe that education, advocacy and community are the three keys to raising a happy, confident, smart child, which is why I currently sit on the board of Ear Community and advocate here in Kentucky every chance I get.

Ear Community Picnics

Ear Community hosts picnics each year to help bring together microtia and atresia families from around the world. They offer a unique opportunity for these families to share experiences and make new friends with those going through similar experiences. Medical professionals, such as world-renowned microtia and atresia repair surgeons, anaplastologists, ENTs, audiologists and therapists, along with world-leading hearing and medical device companies, come together to help educate attendees on the latest and greatest in each of their respective fields.

This year, Cochlear will be joining the fun as a platinum sponsor and will be offering a chance for attendees to demo the new SoundArc. Jamison is most excited about trying it out in person and hopes to get one very soon!

I would truly encourage every microtia and atresia family to attend a picnic, said Melissa

My son looks forward to them every year. He looks forward to seeing all his ‘friends’ that look like him and to all the fun he has. He hosted the Louisville picnic a couple years ago and is so ecstatic to be the 2018 Nashville picnic host!

2018 Schedule

This year, there are a total of six picnics taking place across the United States and Canada. They are hosted by local families who have a loved one born with microtia and atresia, hemifacial macrosomia, Treacher Collins Syndrome or Goldenhar Syndrome. Here is this year’s line-up. Find an event near you and register to attend. It’s completely free! 

Sacramento, CA
Saturday, June 23rd
11:00 AM – 3:00 PM RSVP

El Paso, TX —
Saturday, July 21st
11:00 AM – 3:00 PM RSVP

Nashville, TN —
Saturday, July 21st
1:00 PM – 5:00 PM RSVP

Hamilton, Ontario Canada —
Saturday, July 28th
11:00 AM – 3:00 PM RSVP

Cincinnati, OH 
Saturday, July 28th
11:00 AM – 3:00 PM RSVP

Charleston, SC —
Saturday, August 11th
11:00 AM – 3:00 PM RSVP

To learn more about Ear Community and how to get involved, visit EarCommunity.org.

 

Cochlear Guest Writer
Cochlear Americas showcases the stories of real people celebrating life's real moments. This blog was written by a guest writer for Cochlear Americas.