Most people reading this already know some of our story. Katelyn was a preemie and born with Total Colonic Hirschsprung's Disease, which has brought many highs and lows over the years, and something she continues to manage for her whole life. https://www.cincinnatichildrens.org/health/t/total-colonic-hirschsprung-disease. At 3-months old, we found out she was also born Profoundly Deaf. At 13-months old Katey was implanted with Cochlear Implants and had the 1st set for 6.5 years. In January of 2019 she received her current set of speech processors. Katey also uses an FM System, which is a microphone that travels with her throughout the day to amplify voices directly to her implants. Katey attends Christian school, so this is not provided by the school. We purchased the system, which is comprised of (2) blue-tooth compatible sleeves for each C.I.'s (separate from what they come with), and the wireless wearable microphone.
Last school year, the FM system began acting up and not staying insync with her C.I.'s. One of the components (either the sleeves or the microphone) has gone bad. The microphone is no-longer sold by the cochlear implant company (they have new integrated technology), and the manufacturer won't sell direct to patients. The sleeves are also considered an add-on/after-market product. Therefore, we hoped to upgrade her whole set-up to the next generation of speech processors, with the FM integration. The new one is 1 single piece worn on the head only, instead of 2-pieces worn on the ear and head, and a bunch of new features: Integrated rechargeable batteries (no more disposable batteries/save money); longer battery life for all day hearing (no more dying mid-day); no more weight on her ears (can wear sun/glasses, no more toupee tape); no broken wires; no missing components; wireless charging; automatic wind reduction outside; and they're very discreet (not advertising her disability).
The problem is the cost & insurance. The new units are $10,175 Each -- $20,350 Total! Cochlear implants are kind-of like software/technology - they have to be completely out of warranty and deemed obsolete before we can obtain the letter of medical necessity needed for insurance to kick in. As of today, I'm being told January of 2024 would be the earliest we could try. That timeframe would encompass this entire school year and half of the following school year. We simply can't wait that long and have her fall behind at school and in her relationships, during these crucial years. Last school year was very challenging without having a complete set-up. For the first time Katey struggled academically, received some low marks, had to do tutoring after school, had an extra set of textbooks at home to re-read what she missed in class, and hours of extra studying to fill in the gaps, bring her grades up, and keep pace. You can imagine how taxing this was on her, and the whole family.
Will you please help us raise money to get Katelyn a new set of "ears" -- any amount donated would be an enormous blessing to our family. Please share with anyone you know who would like to help.
Much Love and Many Thanks - The Michel's