Lynjbennett65
"News update: I just thought you all would like to know that I received a call from the mayor of my town regarding the response to my report re: the dog bite/attack. She's not only my town Mayor but she's also on the county council so she has the ability to bring to light holes in the safety net that is supposed to protect us all. When I explained my situation she was quite appalled and asked about my rare diseases and how the attack impacted me not only physically but mentally. It turns out that her nephew may have Postural Orthostatic Tachycardia Syndrome. She wanted my best advice as to how to get him help so he's not waiting 10 years for a diagnosis like I did. Now she has the complete picture on how difficult it has been to find the right help. I encouraged her to get the whole family involved in supporting and raising awareness for Peter, her nephew. I don't think anyone will slip through the cracks at the health department again. Peter's father is a well known lawyer in the area. Once he gets the sense that my disability was not accommodated I'm sure there will be changes in the Health Department. I know there isn't enough money, there never is but it's imperative for survival that we care for the rare and the physically weak among us. (we all know rare doesn't mean weak... it means strong in a way that most people can't fathom) Take heart, fight on, you aren't alone. "
I look forward to hearing updates, it's a pretty awesome coincidence! - Warmly, Donna (Team Member)
I'm very grateful for not only having the ability to help the Mayor but also to make my case through a common rare syndrome. I'll keep you posted.
Lovely picture of your girl! How is she doing, and how are you doing? - Warmly, Donna (Team Member)