An Ear for Jonah
Donation protected
Five years ago, our precious son Jonah was born. Shortly after delivery we learned that he was born with Microtia which essentially means he has an underdeveloped ear. In his case, he has only a small flap, no ear canal or outer ear on his right side. He was also diagnosed with torticollis or “twisted neck.” This causes tightening in the muscles on the right side of his neck that limited his neck mobility. Following this overwhelming news, we later learned he also had hemifacial microsomia. This means that he has underdevelopment of the right side of his face, and profound hearing loss in his microtia ear. If this wasn’t enough information to processes it was also discovered that he has cataracts in both eyes resulting in visual impairment.
During the first few years of his life, we worked many hours through the weeks with physical therapists, occupational therapists, speech therapists, eye therapist, head-start teachers, and many specialists. There were countless exercises that we performed that the therapists had suggested including therapeutic stretching of his neck muscles and working on achieving his developmental milestones. Over these past five years he has overcome numerous obstacles including but not limited fine motor and speech delays, feeding difficulties and visual impairments. He continues to require treatment for his lazy eye.
In May of 2016, his was finally at the age where he could receive a CT scan which would tell us if he has a developed middle ear (the part of the ear that functions in hearing) on his right side. We anxiously awaited the results from the doctor. Unfortunately, we learned that this part of his ear is also underdeveloped; therefore, restoring natural hearing is not an option for him. In the beginning, it was devastating for us to understand that his quality of life would be impacted in such a way. Around this time it was also discovered, during a physical exam, that he has an underdeveloped tendon in his right thumb, which would require two surgeries to correct.
In May of this year, he will be undergoing a multi-step surgery including ear reconstruction, a cheek implant and a bone-anchored hearing aid implant. We have waited a long time for this surgery to provide him with the ear he was not born with along with the ability to possess the hearing he’s never had on that side.
I have never treated Jonah as if he were different from either of my other boys. As a mother, you always question if the choices you make are the right ones and oftentimes you have no way of knowing. You can only make the best decision before you and hope that this subsequently results in a positive outcome. Throughout all the obstacles we’ve faced there have been many choices that were almost impossible to confront. But my precious son has shown incredible strength, bravery and perseverance without fault. He's resilient and knows no limits. We have chosen to move towards this next step in the hope that he will never have to know that he’s different on the outside, nor should he struggle with hearing. We want him to be able to do simple things like wear the glasses he needs without hurting his face or wear fun costumes and masks around/with his peers without it falling off immediately.
Due to the highly-specialized nature of the procedure there are only 2 surgeons within the U.S. that can perform it. The one we have chosen pioneered this procedure and performs it on a near-weekly basis for children from all over the world. I have had the pleasure of meeting with this doctor twice and he is truly passionate about helping the children he treats. He is an out-of-network provider for our insurance and we will have to travel to Los Angeles on two separate occasions for this surgery.
Tallying up the fees not covered by insurance (doctor’s bill and our portion of the hospital bills) with annual out-of-pocket costs, the cost of the hearing aid, travel expenses and missed work will make up an impressive cost. A future hurdle we will need to overcome later this year will be for Jonah to have the procedures to fix the tendon in his right hand. We are asking for any help to ease this burden and to help Jonah have the highest quality of life that he deserves. We are eternally grateful for any considerations, prayers, shares or donations.
During the first few years of his life, we worked many hours through the weeks with physical therapists, occupational therapists, speech therapists, eye therapist, head-start teachers, and many specialists. There were countless exercises that we performed that the therapists had suggested including therapeutic stretching of his neck muscles and working on achieving his developmental milestones. Over these past five years he has overcome numerous obstacles including but not limited fine motor and speech delays, feeding difficulties and visual impairments. He continues to require treatment for his lazy eye.
In May of 2016, his was finally at the age where he could receive a CT scan which would tell us if he has a developed middle ear (the part of the ear that functions in hearing) on his right side. We anxiously awaited the results from the doctor. Unfortunately, we learned that this part of his ear is also underdeveloped; therefore, restoring natural hearing is not an option for him. In the beginning, it was devastating for us to understand that his quality of life would be impacted in such a way. Around this time it was also discovered, during a physical exam, that he has an underdeveloped tendon in his right thumb, which would require two surgeries to correct.
In May of this year, he will be undergoing a multi-step surgery including ear reconstruction, a cheek implant and a bone-anchored hearing aid implant. We have waited a long time for this surgery to provide him with the ear he was not born with along with the ability to possess the hearing he’s never had on that side.
I have never treated Jonah as if he were different from either of my other boys. As a mother, you always question if the choices you make are the right ones and oftentimes you have no way of knowing. You can only make the best decision before you and hope that this subsequently results in a positive outcome. Throughout all the obstacles we’ve faced there have been many choices that were almost impossible to confront. But my precious son has shown incredible strength, bravery and perseverance without fault. He's resilient and knows no limits. We have chosen to move towards this next step in the hope that he will never have to know that he’s different on the outside, nor should he struggle with hearing. We want him to be able to do simple things like wear the glasses he needs without hurting his face or wear fun costumes and masks around/with his peers without it falling off immediately.
Due to the highly-specialized nature of the procedure there are only 2 surgeons within the U.S. that can perform it. The one we have chosen pioneered this procedure and performs it on a near-weekly basis for children from all over the world. I have had the pleasure of meeting with this doctor twice and he is truly passionate about helping the children he treats. He is an out-of-network provider for our insurance and we will have to travel to Los Angeles on two separate occasions for this surgery.
Tallying up the fees not covered by insurance (doctor’s bill and our portion of the hospital bills) with annual out-of-pocket costs, the cost of the hearing aid, travel expenses and missed work will make up an impressive cost. A future hurdle we will need to overcome later this year will be for Jonah to have the procedures to fix the tendon in his right hand. We are asking for any help to ease this burden and to help Jonah have the highest quality of life that he deserves. We are eternally grateful for any considerations, prayers, shares or donations.
Organizer
Carmin Ranieri
Organizer
Puyallup, WA
