Help Me Hear!!

I was born on January 20, 1993 in Terjolai, Republic of Georgia, with Golden Har Syndrome.  My parents gave me up for adoption and I was in an orphanage for the first 22 months of my life. There, I was malnourished to where I should have died, but I kept fighting. My body was positioned in a sitting position with my legs stretched forward and my back perfectly straight against the wall with my arms by my side, wrapped and tied, (so as to keep us warm). I weighed only 15 lbs at 22 months when my mother adopted me and brought me to Casper, WY in late 1994. With my orphanage situation, the doctors could not see into my right ear for the first six months that I was in WY. There was infection upon infection and I lost a very good amount of hearing out that ear. Now my left ear is totally closed and missing 2 out of three bones, (hence Golden Har Syndrome). I won't go into much detail of all my physical challenges but I will go into a few things.
There are 5 categories and I fit in 3 out of the 5 for Golden Har. This , meaning that I am very fragile, physical wise. It effects my left side of my body. Missing some muscles, ribs, and bones. My skull is whats called, "Naturally fixed floating skull." Meaning, if I get bumped or jolted, I can be paralyzed from the neck down or die from a broken neck. Just a simple push is all it takes. The first three Vertebraes are naturally fused together to where they look like as a radiologist describes, "Crushed Legoes." My left pectorial muscle is gone from the shoulder down to under the armpit. Only able to lift my arm a little not a lot. My lungs and ribs are compressed together which makes it hard for hikes and other rigorous activity. Which I still do, but knowing my limits!  :) With all of these problems we didn't know the extent of my challenges until I was about 4ish or 5ish. One being  how much hearing loss was gone  because of how bad the infections were.  I had taught myself how to talk by reading lips. That is how I can communicate best is by reading your lips. I didn't recieve a hearing aide until I was older because I was doing so well, talking wise. My mom didn't know how much I couldn't hear  until I kept turning the stereo to full blast. She would turn it down and I would stop dancing and run and turn it up to full blast. That's when she knew I needed to see an Audiologist. So growing up I had an FM System (Hearing Device) to hear the teacher. They would talk into a tiny microphone for my fm system. Outside of school  I had a bone conductive hearing aide which looked like a headband. It would take the sounds and would vibrate on my skull to my left inner ear, so I could distinguish sounds. This is how I was able to hear while growing up. In my sophomore year I was in need of a bigger size hearing aide for it was too tight and causing deep deep sores behind my ears. All companies who specialize in hearing devices does not carry adult size bone conductive hearing aides. There's only child size headbands. My only  option at that time was a new hearing aide procedure, called BAHA (Bone Anchored Hearing Aide) which required surgery. The BAHA would be surgically inserted underneath the skin and connected to the bones it needed to be able to work. With my Naturally fixed floating skull my head cannot tip back as far as normal movement. My head can only move 5mm to each side.  With this, anestesia was out of the question, for your head has to be tipped back very far to put the breathing tubes down. My head can not bend that far back to have it successfully inserted without putting myself in danger. With all the complications, I did not recieve a hearing aide and I was doing great for a while. But for the last few years I have had more problems hearing and knowing what people are saying that even lip reading is not enough for me anymore,  to have a full on conversation without having to ask them, "What, " "Repeat that please," numerous times.  And I see so much frustration in people when I ask them to repeat  that finally they just give up and say, "Never mind."  
In the meantime my mom saw that there was a Hearing Aide Company that was coming to Casper to present new hearing aides. One was called, Baby BAHA. No surgery required, had the exact same thing as a bone conductive hearing aide and was a headband. I had tried different hearing aides before and nothing worked for me. The Bone conductive was the only device that worked best for me. The Baby BAHA is the closest we have found that works like a bone conductive.  I talked to the Audiologist that was there who was from Casper and she had me try it on. Mind Blown! I heard people whispering and I wasn't even facing them! I even heard a pen drop and turned around and saw the lady picking up her pen! It was a  miracle how much I heard in that little amount of time! Unfortunately,  I checked with my insurance , and my insurane does not cover for hearing devices because it is not in the essential category. They are in their accessory category.
The last 1.5 years  I have been able to get out of $15,000 of debt with working 2 jobs and working little jobs on the side. Reasoning is so I can go on a mission  to serve the Lord through my church. I am now saving so I can go on my mission hopefully this fall or winter. I cannot save for my mission AND for a hearing aide at the same time. For my mission will be $7,000 alone. A hearing aide can be from $3,000 to $5,000. The Baby BAHA is $5,000. I had to leave one of my jobs because I was overworking my body to where I was just ill all the time! I am now down to 1 job and working little jobs such as housesitting, babysitting, and things like that. I know that a hearing aide would be so beneficial for me, not only  for my mission, but for the years to come. I have lost more hearing over the years and have struggled significantly to being in group settings because I am not able to hear people as well, so I just sit there and just watch people. And for those of you who know me know thats not me. I love to be involved in activities and to get to  know people and make friendships.  Through my school years I was involved in Student Council, Choir, Manager for sport teams, and so much more!
Having a hearing aide will be able to help me so much in getting that little piece but huge piece of life back to me! Anything will help and I want to thank you now for your generosity! Have a Great Day!

Donations

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  • Marcus And Tony Simpson  
    • $60 (Offline)
    • 41 mos
  • Emily Decker 
    • $125 
    • 43 mos
  • Jerry & Susan Taylor 
    • $100 
    • 43 mos
  • Anita Wood 
    • $25 
    • 43 mos
  • Anonymous 
    • $100 (Offline)
    • 43 mos
See all

Organizer

Angie Bellamy 
Organizer
Casper, WY
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