Wow! I never thought that I would actually create a blog to raise money for Kolton. Thanks to Melissa G, I think I've got the hang of it!
Some of you may know that Kolton was born with a very rare syndrome, called Nager's. There are only approximately 200 people in the world that have been diagnosed with Nager's. Kolton's syndrome has brought some difficulties to his life. He has skeletal issues in his hands, he has a compromised airway, he has utilized a feeding tube and has moderate/severe conductive hearing loss. Kolton has gone through about 8 surgeries so far. Our family has always said that we would seek out the "best of the best" doctors and surgeons for Kolton. We have been able to provide him with everything that he needs medically, up to this point.
Kolton is in need of a BAHA, Bone Anchored Hearing Aid. This process requires two surgeries where doctors surgically implant the aid into his skull. When we first started inquiring about the surgeries, we were quoted a price of approximately $64,000. Our private insurance has denied us twice to cover any of the surgeries. At this time, the hospital has brought down their quote to approximately $50,000. Boys Town National Hospital has graciously reduced the cost of surgery by 60%, which leaves us with approximately $20,000 plus the cost of the aid ($4,000).
It is a truly overwhelming feeling to not be able to provide what your child needs medically. We have completed several scholarship forms from various foundations. We have been denied by one, so far. We continue to hold out hope on the others.
Kolton's cub scout pack donated about $200 to start our fundraising efforts. My wonderful friends, Callie and Jenny, have helped raise $1700 from the staff at McPhee. Another friend, Kim, and her fiance' have agreed to host a benefit at Taco John's. That is happening this Wednesday and I can't wait!
Our family is truly appreciative of all of the support that we have received thus far. We know that we have a long way to go, but continue to have hope that we will raise the money.