I know we’ve been hounding you. How many Twitter messages and emails have you received from PANDAS parents since last nights episode aired? I can only imagine it’s been quite a few.
While I can assure you no one in our community is celebrating knowing you and your daughter have suffered so immensely, we’d be lying if we said that we didn’t day dream about the day someone, anyone, with your kind of reach and influence would ride in on a white horse to take up our cause and run with it.
There’s a part of me that’s embarrassed to admit that I’ve spent countless hours on the internet Googling “Celebrities who have children with OCD” in a desperate attempt to find you. So this morning when my email, text and Facebook feed lit up with the news that Delilah had PANDAS, I was kind of surprised at how unsettled I was. I went online to see what I could find and I saw photos of your beautiful daughter modeling. And I looked at her eyes, like really looked, and I ached for what she has gone through. When I looked at her innocent face I had that same familiar heartsick feeling I have felt far too many times before when gazing into my own daughter’s eyes. She is brave. Far more brave then she should ever have to be at her age.
Then, I looked at your photo and imagined what life must be like for you with all the camera’s on while you fought to keep your daughter healthy. I can’t even imagine living the life I do in the public eye.
I’m writing this post today in hopes that you and your daughter will read it. That you will read these words and have mercy on our community.
We are beyond grateful for your “coming out” on Twitter about PANDAS. But as they say, no good deed goes unpunished. Now that you have, I’m asking for you to please do even more. I’m asking you to be the voice that we so desperately need. Join our cause and use your influence to help our children the way you’ve helped your own. You should know that there are thousands of parents today, parents just like me, that are desperately hoping that the tragic situation your family has struggled with will somehow work for good for other families still in crisis. We need more PANDAS & PANS awareness so that physicians can diagnose early and properly treat. We need funding for research to find a cure. We need strong fearless advocates and leaders. We need you. We need you to take up this cause and fight for those of us who are too weary to do so.