Thursday, October 5, 2017
As I sit here and write this open letter to you, I reflect back on 8 and 1/2 years ago when we were first told my daughter has Blount's Disease. We were given no prognosis, not enough answers and were left to depend on our own advocating and internet research. Here we are 2017, 6 operations later, and still battling this condition..........
But along the way I have come across a circle of people I now consider family; my Blount's Disease family. For all of you are also facing your own challenges, experiences, emotions and a whole new world of having a rare condition. You are not alone. We as a rare community support one another, encourage one another and share our experiences along the way to possibly bring hope to those newly diagnosed. I understand the frustration each and every one of you have with no supporting foundation for this condition. I understand the stress you face from different doctors visits, therapy appointments, surgeries and the financial burden it may put on your family.
Never doubt the beautiful impact you have on those around you and all your fellow warriors despite all the challenges that come with Blount's Disease. Never be afraid to advocate, ask questions and educate others on this condition. Battling a rare disease takes strength. Spark inspiration in others and be unstoppable. No one is made to understand the journey you are going through but fight the good fight and stay strong. You my warrior, are an inspiration to the world and your story matters...........
You my warrior are strong....Blount's Disease Strong.
Angela, Blount's Disease Mama