As I sit here and write this blog, I reflect back to when my daughter was first diagnosed with a rare disease. It was overwhelming and stressful to have to learn about her condition and there were times I blamed myself. There were times I would hide in my room and cry because I felt helpless when I wasn't getting the answers I needed or the right resources to get her the right treatment from the right specialist. You cant win what you don't fight for. This isn't about winning battles that make you happy. This is about advocating for yourself, or for your loved one. This is about making your voices heard. Raising awareness and making a difference. At the end of the day, no one understands your child better than you do.
Fight for what matters most and if you don't feel you are getting the answers you want you get another opinion. Sometimes we have to be our own Doctors when it comes to rare diseases. Not everyone has the answers to every diagnosis. If that were the case, we'd all be cured right? Whatever journey you are facing let it mold you into being that warrior who will take on any obstacle ahead that you may face. It may take more than one fight, but be that champion who doesn't give up, because you can't win what you don't fight for.
Stay Strong.......Break the silence......Fight for what you want.......
-Blount's Disease Strong