My biggest goal as a health activist is the well being of my kids no matter if it's for Hemophilia or diabetes. To ensure their health no matter where or what they are doing.
My next goal would be that I have empowered them to advocate for themselves because I won't be around to advocate for them forever.
I want to be a voice big enough that local government and national government listen to myself, my son and all people with bleeding disorders. To know that even with insurance our clotting medicine is STILL expensive. The medicine that Hemophiliacs use is THE second most expensive drug on the market...the first of which is cancer treatment drugs. For government to realize that even though our bleeding community is small we are still mighty. We matter. Our kids matter. Our loved ones matter.
I want to be a voice that helps Hemophiliacs in third world countries get the medicine they need to stop their bleeds. That no one should suffer or DIE because they don't have access to medication to help them live and thrive.
I want to be a voice that lets my son's school know that even with a bleeding disorder he can do anything. That he shouldn't be treated differently. For his future Coaches to play him as they would a non-bleeder. To work with him, despite his Hemophilia, and develop him as they would each player on that team.
I want to be heard. I want my son to be heard. I want YOU to be heard.
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