The story of Aiyana
My daughter is five years old and was diagnosed with a congenital cholesteatoma and had it removed last March. She is coming up one year post op. A cholesteatoma is a growth in the middle ear that can destroy hearing bones, grow through skull to brain and facial nerves etc.. my daughters was misdiagnosed and my mom gut researched day and night and got a second opinion (at the time I didn’t really know for sure what I was getting a second opinion for) the surgeon said yes and had her in within a month. This awful disease can grow back even after removal. My daughter Aiyana had two hearing bones replaced. I believe this could’ve been avoided had she been diagnosed properly. Cholesteatoma is often misdiagnosed and I believe is more common than they make it out to be. We need more research, support and treatment. March is Cholesteatoma awareness month. It can grow back over and over and over and My daughter needs to be monitored for life. I believe in my heart there is a bettter way there CAN be a better way to fight this disease and clear it so it can’t regrow. It just needs attention. I am looking to raise awareness and support in anyway possible for my daughters future and all those who suffer this disease. 💛