Archives for September 2014

Ava Katuszonek, 3 years old, RMA, West Virginia, USA, wearing her new Oticon Medical Ponto Plus processor.

Meet Ava Katuszonek, an adorable little three year old girl who was born with Microtia and Atresia of her right ear. Ava is a very happy little girl who enjoys playing with friends and is excited to learn the alphabet and begin reading. However, when Ava was about one year old, her mom, Shannon, began noticing her struggling with her hearing. Ava wasn’t always responding to Shannon’s voice when she would call for her. Two years ago, Ava and her parents, Paul and Shannon, attended an Ear Community Microtia and Atresia picnic in Pleasanton, California where they were given the opportunity to learn more about bone conduction hearing devices. Ava’s parents tried to obtain a BAHA for little Ava as soon as they could, but their insurance plan under Kaiser Permanente denied their coverage for a BAHA. Ava’s mother, Shannon, also did not realize there were many options available on the market for BAHAs. Now knowing this information, Ava’s parents continued appealing with their insurance provider in order to help Ava hear better with a BAHA.

Shortly after attending our Ear Community picnic in California (two years ago), Ava lost her father in a car accident. As you can imagine, this tragic loss devastated Ava and her entire family. “I remember receiving a call from Ava’s mother, Shannon, asking me if I had a picture that I had taken of the three of them at the picnic and if she could have a copy because she wanted to keep some recent memories of Paul,” said Melissa Tumblin, Founder of Ear Community. Although Shannon and Ava were able to receive temporary insurance coverage, the insurance coverage they had through this provider also did not provide coverage for a BAHA. “It has been very frustrating and challenging trying to obtain a BAHA for Ava,” says Shannon. Recently, Shannon and Ava moved to West Virginia and were able to find insurance coverage for their family again, but still no coverage for a BAHA for little Ava.

Shannon decided to apply to the Ear Community Organization for help obtaining a BAHA for Ava. On September 20, 2014, Ava was fitted with her new Oticon Medical Ponto Plus system. Shannon says, Ava just loves it and thinks it is so exciting and something special. Thank you to Dr. Regina Talbert in Bluefield, Virginia for helping program and fit Ava with her new processor. Thank you also to Lindzee Nunez Weeks of Oticon Medical for helping make sure Dr. Talbert had everything she needed for little Ava’s fitting!

“Sometimes I like to think someone is looking out for us, says Melissa Tumblin of Ear Community… and maybe that someone in Ava’s case was her father, Paul.” The Ear Community Organization is so very happy to have been able to help little Ava obtain a new Oticon Medical Ponto Plus system so she can hear everything clearly, everyday of her life. “Shannon has become an amazing friend of mine since meeting her, Paul, and Ava just two years ago. Shannon’s family not only enjoys giving back to the community when they can, but over the past couple of years, Shannon and her family have shown their support to Ear Community by choosing to donate to our organization. Just this past June, Shannon also hosted our Ear Community Pleasanton, CA picnic.” says Melissa Tumblin. Shannon says “It was an absolute honor to host the 2014 Ear Community picnic and something that I have wanted to do to help give back to the community and to an organization that has helped me and my family directly.”

Ear Community wishes to say a very special thank you to Alan Raffauf, Vice President of Marketing of Oticon Medical, for donating this hearing device to Ear Community so that the foundation could help Ava. Thank you for your support and for helping Ear Community continue with its mission of helping the Microtia and Atresia community. While the Ear Community organization is proud to have donated Ava’s new Oticon Medical Ponto Plus System and soft band head band, none of this would have been possible without Oticon Medical donating this amazing hearing device to Ear Community to begin with. Oticon Medical believes in helping individuals with hearing loss so that they can live a better quality of life. Oticon Medical is a well respected international hearing device manufacturer that is a part of the “William Demant Group [which has] 100-plus years of experience in audiology and sound processing and established manufacturing and logistics infrastructure.”

We are all so happy for you Ava! Hoping you have the brightest future from this day forward!

Thank you!
Melissa Tumblin
Founder and Executive Director of Ear Community
and
Ear Community Board of Director Members

Dustin Neerhof proudly wearing his new Cochlear Americas Baha 4 processor, LMA, Goldenhar Syndrome

Meet Dustin Neerhof, a sweet little nine month old baby boy who was born with Microtia and Atresia of his left ear and hemifacial microsomia (diagnosed as having Goldenhar Syndrome). Dustin is a happy little boy who enjoys cooing and babbling with his identical twin brother and the two are quite the cute duo! Dustin just loves being cuddled by his parents and enjoys learning something new each day, but Dustin is having trouble hearing his parents voices because of being born with Atresia.

Dustin’s mom, Jaalah, says “the name Dustin means Valiant Fighter and Dustin has lived up to his name. He has had a very difficult start to his life being in and out of hospitals and emergency rooms having undergone five surgeries to date.” At first, Dustin was struggling with severe reflux and aspiration and had his first surgery when he was under two months of age for anti-reflux surgery Fundoplication and Gastrostomy Tube surgery. Dustin has been dependent on his feeding tube for his nutrition since this surgery. In addition to Dustin’s reflux concerns and feeding tube, he also had life threatening obstructive apnea and it was discovered that he was choking on his tongue, due to his jaw being misaligned from having hemifacial microsomia, which was interfering with his breathing. Dustin was dependent on a CPAP machine for three weeks of his life while living in the Neo-natal Intensive Care Unit. Dustin’s parents found themselves faced with a difficult decision to choose either a tracheostomy or an invasive mandibular jaw distraction to lengthen his jaw. After much thought and discussions with multiple medical professionals, Dustin’s parents chose the jaw extension surgery. The surgery was successful and little Dustin was finally released from the hospital in April of this year and has been home since.

Now, that Jaahlah can focus on Dustin’s hearing loss a bit more, she realizes that he isn’t hearing everything and is very concerned that he will be missing out on many sounds. She is worried that he will struggle with his hearing as he gets older, especially with his vocabulary soon to develop. Unfortunately, the family’s insurance plan through Humana does not have any coverage included for hearing devices or hearing tests. Jaalah has been so busy with the twins, Dustin’s well being, and medical bills, that she has not yet been able to return back to work, now relying on her husband as their only source of income. Thankfully, Jaahlah found out about Ear Community through their audiologist, Dr. Katie Zawistowski at Children’s Hospital Colorado, and Cochlear representative, Wendy Fuller. Ear Community’s Founder, Melissa Tumblin says “When we received Jaalah’s hearing device application for Dustin, our board members immediately wanted to help him with a Baha 4 from Cochlear Americas! This family has been through a lot and aside from all that little Dustin has endured, it is so important that he be given the help and opportunity to hear right away.”

Dustin’s fitting: (left to right) Dr. Katie Zawistowski of Children’s Hospital Colorado, Wendy Fuller of Cochlear Americas, and Dustin with his happy mom, Jaalah Neerhof.

On September 10^th, 2014, Dustin was fitted with his new Cochlear Baha 4 sound processor with soft band head band. A special thank you to Dr. Katie Zawistowski at the Bill Daniels Center for Children’s Hearing for Children’s Hospital Colorado for programming and fitting Dustin’s new Cochlear Baha 4 processor. Thank you also to Wendy Fuller of Cochlear Americas for being with Dustin and his family on his special day when receiving his Baha 4! Together, both of you helped make this family’s day not only exciting, but you helped them by putting them at ease and by being there for them because of your commitment to help a child hear. “Thank you for doing what you do for the children and adults just like Dustin, says Melissa Tumblin…these are the happiest moments when organizations like Ear Community, Cochlear Americas, and Children’s Hospitals look forward to, appreciate, and enjoy.” Thank you for coming together to help little Dustin hear better!

Ear Community is a nonprofit organization that helps the Microtia and Atresia community worldwide. Ear Community is so very thankful for the help that it receives and when other organizations come together to help Ear Community with its mission, to help children and adults born with Microtia and Atresia. “Thank you to Cochlear Americas for helping little Dustin hear better and for donating a new Baha 4 processor to him so he can hear easier as his vocabulary begins developing,” says Melissa Tumblin.

Ear Community would especially like to thank Kerri Lewandowski and Joanne Kernie of Cochlear Americas for donating a new Baha 4 to our foundation so our foundation could help another child like Dustin hear better. “Cochlear is the global leader in implantable hearing solutions. It has a dedicated global team of more than 2,500 people who deliver the gift of sound to those with hearing loss in over 100 countries. Its vision is to connect people, young and old, to a world of sound by offering life enhancing hearing solutions. In 2013, Cochlear celebrates 100,000 Baha System users – all with unique stories of how being able to hear again has impacted their lives. The Cochlear promise of “Hear Now. And Always” embodies the company’s commitment to providing its recipients with the best possible hearing performance today and for the rest of their lives.”

Hoping this will help make your life more enjoyable and full of sounds Dustin! Enjoy your new Cochlear Baha 4! All of us here at Ear Community are so happy for you!

Thank you,
Melissa Tumblin
Founder and Executive Director of Ear Community
www.EarCommunity.org

Eliana Villanueva, 3 years old, RMA, wearing her newly donated Cochlear Americas Baha 4 processor!

Meet Eliana Villanueva, a beautiful three year old little girl who was born with Microtia and Atresia of her right ear who lives in Riverbank, California. Eliana enjoys playing with her older brother and sister (Joey and Samantha) and is proud to be a mama’s girl, says her mother, Veronica. Eliana is also a very kind and loving child who just loves playing with her younger cousins.

Two years ago, Eliana’s parents, Veronica and Santiago, found Ear Community and had attended the organization’s picnic for Microtia and Atresia families in Pleasanton, CA. While at the Ear Community picnic, Eliana had the chance to try on a BAHA for the first time, but Eliana was too young to express what she thought about the BAHA at the time. However, Eliana’s mother says that “she knew the hearing device was working when it was on Eliana because her eyes got glossy and it looked like she wanted to cry.” Over the next couple of years as Eliana’s vocabulary developed, Santiago and Veronica decided that Eliana may now be ready for a BAHA as they could see her struggle lately with her hearing. When Santiago and Veronica heard that an Ear Community picnic was coming back to Pleasanton, CA again this summer (2014), they knew they had to take Eliana again because she was now old enough to express verbally what she would think about trying on a BAHA. When Veronica and Eliana arrived at the Ear Community picnic, they went straight to the table and stood in line to put a BAHA on. Veronica says “Eliana’s reaction was priceless! I asked her if she could hear and she said yes. Was it loud or was it perfect and Eliana said it was perfect.” This was the moment when Veroinica knew they had to try again to get Eliana a soft band BAHA. When Eliana got home, she told her father, Santiago, all about the “noise maker” that she had on her head and how much she wanted one.

During the past year, Eliana’s parents had inquired about the Cochlear Baha 4 through their audiologist. Unfortunately, the family was denied insurance coverage for the device and the cost of a Baha was beyond what the family could afford. They were encouraged to apply again through the appeals process and were still denied by Kaiser. Veronica decided to apply to Ear Community for help on behalf of little Eliana. On August, 28^th, Eliana was fitted with a new Cochlear Baha 4 processor. On the way driving to the audiology office, Veronica said that Eliana kept singing a song in the car on the way “I’m gonna get my hearing aid, I’m gonna get my hearing aid.” It was a joyous day for Eliana and her whole family!

Since Ear Community was able to help Eliana obtain a hearing device, Veronica and Santiago have become supporters to Ear Community. As part of a thank you to the Ear Community Organization, Santiago (Eliana’s father) took the ice bucket challenge, but decided to make their donation to Ear Community, for children and adults born with Microtia and Atresia. Ear Community Founder and Executive Director, Melissa Tumblin, thanks the Villanueva family for giving back to the Microtia and Atresia community through Ear Community. “We are so very happy that we could help little Eliana hear better and that you were able to learn about a BAHA through our family events,” says Melissa.  Here is the link to the video of Eliana singing in the car about getting her Baha 4!  https://www.facebook.com/video.php?v=4780912217443&set=vb.1734811718&type=2&theater

Ear Community is a nonprofit organization that helps the Microtia and Atresia community worldwide. Ear Community is so very thankful for the help that it receives and when other organizations come together to help Ear Community with its mission, to help children and adults born with Microtia and Atresia. Thank you to Cochlear Americas for helping little Eliana hear better and for donating a new Baha 4 processor to her so she can thrive in school,” says Melissa Tumblin.

A special thank you to Dr. Jennifer Hayes and Dr. Marilyn Dixon-Brown, both audiologists of Kaiser Permanente for volunteering their time and services to program Eliana’s new Cochlear Baha 4 processor.

Ear Community would especially like to thank Kerri Lewandowski and Joanne Kernie of Cochlear Americas for donating a new Baha 4 to our foundation so our foundation could help another child like Eliana hear better. “Cochlear is the global leader in implantable hearing solutions. It has a dedicated global team of more than 2,500 people who deliver the gift of sound to those with hearing loss in over 100 countries. Its vision is to connect people, young and old, to a world of sound by offering life enhancing hearing solutions. In 2013, Cochlear celebrates 100,000 Baha System users – all with unique stories of how being able to hear again has impacted their lives. The Cochlear promise of “Hear Now. And Always” embodies the company’s commitment to providing its recipients with the best possible hearing performance today and for the rest of their lives.”

Here’s to hearing everything a child should hear Eliana! Enjoy your new Cochlear Baha 4!  All of us here at Ear Community are so happy for you!

Thank you,
Melissa Tumblin
Founder and Executive Director of Ear Community