Today I was dared, dared to dream about something “audacious”. I tried to think of better dreams, I tried not to go to that place that my heart wanders to but I couldn’t avoid it. If I am going to dare to dream big I am going to dream of a cure, a treatment, a world that a diagnosis f Rett syndrome isn’t so devastating that it takes you breath away. The truth is that 2 seperate clinical trials are in phase II RIGHT NOW. Results are being seen. Researchers are figuring this out faster than they thought they could. The only thing that stands between me and the day that there is a medical intervention for Claire is time and money. Time I can’t control. Money, ugh, that one is tough, very touch. I hate fundraising. I hate begging for help. Yet there is something that I hate more. I hate that yesterday, when Chloe wanted to play alone with Claire, just as I was walking away her sweet little voice called out, “Don’t worry mom, if she turns purple or has an emergency I will call for you.” Yeah, I hate that a lot more, it sorta makes me so angry that I want to take a sledge hammer through a china shop, but that wouldn’t help. Raising money, that WILL. So…here’s my fundraising page for the strollathon. You can make a contribution. You can share the page. You can make your own team. You can do nothing. That isn’t an option that I have. Click here to help and thank you in advance, your support means so much.
I shared your post on my personal fb page. I love that you are willing to break out of your comfort zone for the betterment of your daughter.
Thank you very much, truly that means so much to me.