Archives for February 2019

How Quinn helped Jay-Dee receive the give the gift of hearing for Valentine’s Day

Quinn Kougl and Jay-Dee Thysen

Quinn “Twinkles” Marie Kougl was three years old, full of sass and attitude, and was born with Treacher Collins Syndrome. Quinn enjoyed playing with her big sister, Nora, and her big brother, Cody, everyday. Quinn was known by many through her family and friends, and the Tour Of Kindness where her mom, Justine, and Quinn would teach others about kindness, acceptance and differences. Quinn’s personality lit up any room she walked into, her eyes were soft and gentle, and her attitude was tough as nails. She had a Twinkle in her eye always and no one ever knew what she was planning next as she always was up to something with her siblings. Quinn loved the ranch life, she loved horses, chasing cows, riding the dirt bike with her dad, riding horses with her mom, and yelling at all those pesky calves in the corrals. However, Quinn struggled daily with her breathing due to a narrow airway. Sadly, Quinn passed away on December 17th, 2018. In Quinn’s short 3 years on this earth, she taught her family everything they could ever need to know about true kindness, true admiration, true strength, and true beauty. Those gifts she gave to her family and friends all around her will be forever remembered in her memories.

Quinn with sister Nora & brother Cody

Shortly after Quinn’s passing in December, Justine contacted the Ear Community Organization wishing to donate Quinn’s hearing devices. One week later, Ear Community member, Heidi Freeman Thysen, reached out to our organization in need of a hearing device as her son, Jay-Dee who was born with Treacher Collins Syndrome, living in South Africa.  Jay-Dee’s hearing device was no longer working and Heidi was struggling to obtain another hearing device through their insurance provider. To Heidi’s surprise, Ear Community Executive Director, Melissa Tumblin, informed her that there was a hearing device available for Jay-Dee that same day she had inquired. Melissa Tumblin contacted Justine to let her know that the organization had found a child in need for one of Quinn’s hearing devices. When explaining who the child was to Justine, she began to cry because she realized she new this family and this sweet little boy!

It was a surprise now for Heidi to discover that Jay-Dee would receive the gift of hearing from Quinn, not knowing that Jay-Dee’s new hearing device had belonged to her. While speaking

Jay-Dee and his new friend at school

with Heidi, she expressed how sad Jay-Dee was because as he often felt alone being the only child in his school with Treacher Collins Syndrome. Melissa immediately reached out to a friend of hers in South Africa, named Mark DeKlerk, who also has Treacher Collins Syndrome and has hosted Ear Community picnics in the past for the organization. Somehow, this introduction was meant to be because both Mark DeKlerk and Jay-Dee are members of Scouts. With Mark being a Springbok Scout (the South African equivalent of an Eagle Scout), he looks forward to connecting with Jay-Dee and Heidi someday soon to learn more about his troop. He is also excited to be a role model for Jay-Dee and offer friendship to him as another individual in the same situation. Recently, a new girl started at Jay-Dees school who also has Treacher Collins Syndrome.  Jay-Dee is very happy and the two have become friends.

Mark DeKlerk

After introducing Mark to Heidi and Jay-Dee, a friendship immediately evolved and together everyone began keeping an eye out for Quinn’s hearing device once it shipped from Colorado to South Africa. Mark also reached out to Dr. Kelly Schroeder to help donate her time to program and fit Jay-Dee’s donated Oticon Medical Ponto 3 Superpower. Quinn’s hearing device arrived in South Africa in one week, but then was retained for taxes at the post office. However, we were able to get Quinn’s hearing device to Heidi and Jay-Dee easily by working together to get funds to Heidi for the taxes. Thanks to Mark’s friendship, Ear Community was able to wire funds to cover the taxes and he was able to get the funds to Heidi in SA so she could pick up Quinn’s hearing device from the post office. Without Mark’s help and without having made an earlier introduction to Heidi and Jay-Dee, getting Quinn’s hearing device to Jay-Dee would not have been so easy. As they say, “it takes a village!” Thanks to meeting other families through support group communities and organizations like Ear Community, friendships that are made help us to help others.  “I believe that Quinn is still making friends and looking out for other children from Heaven and that we were able to get her hearing device to Jay-Dee so easily because she was looking out for Jay-Dee,” said Melissa Tumblin.

Jay-Dee and Dr. Kelly Schroeder

When Heidi finally received the donated Oticon Medical Ponto 3 Superpower, she was overcome with emotion once she discovered that Jay-Dee’s donated hearing device was once Quinn’s. Justine had included a card and a nice letter about Quinn that had accompanied a letter from Ear Community explaining how this gift of hearing came about. Both, Justine and Heidi, are happy that Quinn’s ears went on to help Jay-Dee hear better and that Quinn was able to help give back to another child with Treacher Collins Syndrome in need. This is exactly what Quinn would have wanted and something that she would have done when wanting to help others and promote kindness and giving.

Ear Community is happy that Jay-Dee received the gift of hearing thanks to Quinn and her family. We hope that her Ponto ear will go on to help Dee-Jay hear his best for many years to come. A special thank you to the Kougl family for making this beautiful donation to help Jay-Dee. A special thank you to Mark DeKlerk for helping a child in need and by helping work together with Ear Community to help get Quinn’s hearing device to Heidi and Jay-Dee safely and quickly. Thank you to Dr. Kelly Schroeder for donating her time and services to help program Quinn’s hearing device for Jay-Dee. Thank you for the friendships that were formed in our support groups over the years and for the love and passion of wanting to pay it forward to help give back to others. I am sure Quinn is smiling up in Heaven and will be watching over Jay-Dee’s Ponto for years to come.

This is what makes a community, brings families together in similar situations, and develops beautiful friendships. We are so happy for Jay-Dee to be hearing his best now!
Melissa Tumblin
Ear Community
www.EarCommunity.org

 

 

Ear Community Summer Picnics for Microtia and Atresia Families


Ear Community is a 501c3 nonprofit organization that helps Microtia and Atresia families around the world. Ear Community is proud to host six family picnics in the United States this year! Microtia and Atresia, Hemifacial Microsomia, Goldenhar Syndrome, and Treacher Collins families…please join us!

Our summer picnics provide a wonderful opportunity for everyone to come together in the same situation, share experiences, and maybe even make a new friend. Lunch will be provided and there will be lots of fun for the kids. Representatives from hearing device companies will be available so you can learn more about the latest Baha/BAHS/sound processors and try these hearing devices on if you haven’t had the chance to do so already. We’ll have representatives from various medical device companies with helpful options for Microtia and Atresia as well helpful ear reconstructive surgeons, ENTs, audiologists, anaplastologists, and therapists mingling with all of us to help us find answers to our questions.

So, please enjoy a FUN and FREE day out with the kids! Please RSVP to the following hosts at a picnic near you. We look forward to seeing everyone this summer! – The Ear Community Organization

California Ear Community Picnic
Fullerton, California

Date:  Saturday, June 15th, 2019
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityCaliforniaPicnic@gmail.com

Indiana Ear Community Picnic
South Bend, Indiana

Date:  Saturday, June 29th, 2019
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityIndianaPicnic@gmail.com

Massachusetts Ear Community Picnic
Boston, Massachusetts
Date:  Saturday, June 29th, 2019 
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityMassPicnic@gmail.com

Colorado Headquarter Ear Community Picnic
Broomfield, Colorado

Date:  Saturday, July 13th, 2019
Time:  11AM to 3PM
RSVP to Melissa at:  ColoradoMicrotia@hotmail.com

Tennessee Ear Community Picnic
Nashville, Tennessee
Date:  Saturday, July 20th, 2019
Time:  1PM to 5PM
RSVP to Melissa at:  TennesseeEarCommunityPicnic@gmail.com
*This event is in collaboration with the Vanderbilt Microtia and Atresia Clinic.

New Jersey Ear Community Picnic
West Orange, New Jersey
Date:  Saturday, August 3rd, 2019
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityNewJerseyPicnic@gmail.com

A special thank you to all of our Ear Community sponsors
for helping make our events possible!
Thank you to our Platinum Sponsors
Cochlear Americas – Baha 5 Connect and Attract and SoundArc and accessories
Oticon Medical – Ponto 3 Superpower, streaming device and accessories
Thank you to our Silver Sponsors
Med-EL – ADHEAR
Stryker CMF – Medpor
Thank you to Vanderbilt University Medical Center and the Microtia and Atresia Clinic
And thank you to Medtronic for being a part of our special events! – Alpha 2 MPO E+ with rechargeable batteries.

A heartfelt story about giving back and honoring community members Dee Inman and Eisen Witcher

Denise “Dee” Marie Inman and Eisen Witcher

Ear Community is honored to introduce you to Eisen Witcher, a local hero who lives along the East coast of Florida with his lovely wife, Jessica, and their adorable son, Izaak. Eisen was born with grade 3 Microtia and Atresia of his left ear. When he was only three years old, he began the journey of outer ear reconstruction which required multiple surgeries to create an ear for him. While his surgeries were successful, Eisen continued to struggle with hearing loss in his left ear. Eisen’s struggle with hearing loss made school difficult for him, even causing him to repeat the third grade. However, Eisen never let his hearing loss slow him down. In fact, Esien found himself working harder than everyone else and when he was told that he couldn’t do something, he would go out of his way to prove them wrong. Eisen graduated college with honors, became an EMT, and now works as an Ocean Rescue Chief Director in his local fire department. He truly is a local hero and has been in the news for rescuing children from shark attacks.

Eisen Witcher

Five months ago, Eisen struck up a conversation with a little girl who was on the beach. To his surprise, this little girl had Microtia and Atresia, just like him, but she was wearing a hearing device.  She let him try on her BAHS (bone anchored hearing system) and he was surprised at how well he could hear! Eisen was so amazed at how far technology had come, he decided to inquire with his insurance provider to see if they would cover such a device to allow him to hear better at work and at home with his family. Sadly, his insurance provider denied his claim for a bone conduction hearing device, which is a situation far too many families face. Eisen’s audiologist told him about the Ear Community Organization and encouraged him to apply for help with obtaining a bone anchored hearing device. When Eisen first sent his application to Ear Community for review, he made it a point to tell our board members that if any child needed a device, even if their application had come in after his, that he wanted the donation to go to a child first. This was very genuine of Eisen to help put others before himself. However, this time it was Eisen’s turn to receive some help from the community, through the Ear Community Organization.

Now, this is the part of our story that really becomes beautiful. Three years ago, on January 30th, 2016, Ear Community had the opportunity to donate a hearing device to a wonderful woman named Denise “Dee” Marie Inman. Dee developed bilateral hearing loss as result of chemotherapy and radiation treatments from nasopharyngeal cancer. Sadly, Dee had been denied insurance coverage for a bone conduction hearing device when she lost her hearing, but Ear Community was able to help her with an Oticon Medical Ponto Power sound processor. Dee gave back to the community whenever she could and helped others through many community organizations. Dee was an amazingly strong woman who was always willing to help others, even

Pictured: Dee Inman and Whitnee Holloway with some of her friends in the community.

when she wasn’t feeling well. In fact, Dee worked with friends helping to fix and rebuild houses through the community and was said to have been “the first one to show up” on the job one day after coming straight from one of her radiation treatments. Dee was so thankful for her hearing device that she helped advocate for many others with hearing loss, helping them understand the importance of being aided and how such a hearing device had helped her get her life back after she lost her hearing. On August 21, 2018, Dee lost her fight to cancer and passed away.In September of 2018, Dee’s husband, Ken, reached out to Oticon Medical to see if there was a way to donate a Ponto device in Dee’s honor. Everyone at Oticon Medical loved Dee and was so proud of her and how she helped advocate for others with hearing loss. Liz Presson, of Oticon Medical, responded by letting Ken know that she knew the perfect organization to reach out to.  When Ear Community received the news, our organization was honored to help donate a Ponto hearing device to someone else in need, in Dee’s name. When Ear Community received Eisen’s application for a hearing device, the organization could not believe what similarities Eisen had in common with Dee. You see, Eisen is 3-year cancer survivor of Lymphoma. When Ear Community spoke with Brendalys Trinidad, of Oticon Medical, letting her know that our organization had found the perfect recipient for a Ponto hearing device to be donated in Dee’s name, Brendalys and staff were happy and thankful that this Ponto could go on to help someone that has made such an amazing

Dee with her husband, Ken Inman.

difference in the community, just like Dee did. How beautiful that Dee’s legacy can continue on and help someone with a good heart like hers. Dee’s husband stated, “I am very honored about this donation in Dee’s name. I know this is something she would have really wanted. Thank you again for this honor. She left quite a legacy and will never be forgotten.” Melissa Tumblin of the Ear Community Organization stated, “It was an absolute honor getting to meet Dee during advocacy meetings with Oticon Medical.  Her smile was beautiful and contagious.  Dee was a beautiful person inside and out.”

On January 18th, 2019 Eisen was fitted with his new Oticon Medical Ponto 3 Superpower hearing device, that was donated in Dee’s name, at Space Coast Audiology Hearing and Balance.  Eisen’s reaction was priceless, he said, “So this is new, I love it.” Oticon Medical even included a stuffed monkey named “Massie” who wears a Ponto hearing device, for Eisen’s son to have. We have been told that, “(Izaak) loves the monkey and he says he wants to wear my ear.” Ear Community would like to extend a heartfelt thank you to Dee Inman’s family for wanting to give back in her name so another individual could hear and honor Dee’s legacy. Dee was a warm and special person, and we are blessed to have known her and had her in our lives. Ear Community would like to extend a special thank you to everyone at Oticon Medical who helped us honor Dee and to help Eisen receive the gift better hearing. Thank you for donating a Ponto 3 Superpower hearing device to help give back to the community! Thank you to John Sparacio (President of Oticon Medical), Alan Raffauf (VP of Marketing and Operations of Oticon Medical), Liz Presson and Liz Flores (Oticon Medical Public Relations and social media), Brendalys Trinidad (Events and Advocacy Manger for Oticon Medical), and Beverly Ostrowski (Director of Customer Service for Oticon Medical) for helping us honor Denise “Dee” Marie Inman and help Eisen Witcher hear better!  A special thank you to Dr. Maija Sweeney at Space Coast Audiology Hearing and Balance, who donated her time to program and fit Eisen’s new Ponto 3 SuperPower – thank you for helping us give back to a local hero in your community.

As Eisen continues his work with his Ocean Rescue team, we wish him the very best of everything. Eisen, we hope that
you have every happiness this world has to offer, and we are grateful for having been a part of your journey. Thank you
for the work that you do, the sacrifices you make, and we are so glad that you are now able to hear and enjoy all of the
wonders this life has to offer. Here is a community link about Eisen and his ocean rescue team and how invaluable they are to the beaches of Florida.

Ear Community is proud to share this heartwarming story during this month of love and giving back!
Thank you,
Ear Community Board Members
www.EarCommunity.org

 

Dr. Leslie Gonsette hosts physician ball to help raise funds for local charities

Dr. Leslie Gonsette (right) with friend and volunteer, Kati Capozzi, during the Physician’s Ball in Alaska on Saturday, January 26th, 2019

On, Saturday night, January 26th, Dr. Leslie Gonsette of the Alaska Hospitalist Group, hosted The Community Wide Medical Staff Ball in Anchorage. The physician’s ball was a hit thanks to the collaborations of Providence Alaska Medical Center, Alaska Regional Hospital, Mat-Su Regional Medical Center and Alaska Native Medical Center! Over 180 people attended with nearly $18,000 being raised that profited four health care related charities:
EAR COMMUNITY ORGANIZATION –  www.EarCommunity.org/donate
ALASKA CHILDRENS TRUST –  www.AlaskaChildrensTrust.org
STONE SOUP GROUP – https://donatenow.networkforgood.org/stonesoupgroup
MAT-SU HEALTH SERVICES – www.MSHSAK.org

Dr. Gonsette, is a board certified physician in both internal medicine and pediatrics.  Dr. Gonsette says she, “had a wonderful time organizing the ball and hopes to coordinate this event again next year!” Dr. Gonsette realizes how important charity organizations can be to families and to the community.   She also knows how important raising funds for them is in order to help keep them doing the good they do in our communities. Dr. Gonsette was happy to help give back!

Here are some pictures from The Community Wide Medical Staff Ball that Dr. Gonsette hosted and organized. Leslie donated her time to make this physician ball possible. A special thank you to Kati Capozzi, Kaydee Glumac, Emily Sanchez and others who also helped volunteer to make this special night possible.

Thank you for your support to the Ear Community Organization and to these other wonderful local charities. Thank you for all of your hard work and your support during this event, Leslie!
– Melissa Tumblin
Founder – Executive Director
Ear Community
www.EarCommunity.org

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