It’s been awhile since we posted anything here. After Rett Syndrome Awareness month, we’re emotionally and physically drained. The event is an intense amount of work, the awareness and videos takes up time too. On top of that, Maggie’s health is hit or miss – somedays she’s ok, others it’s a real struggle for her to walk, to eat, to breathe, and it’s hard to force yourself to blog during those times. Then the election happened and it just didn’t seem like the right time to share. Now that the holidays are upon us, it still feels intrusive, but after hearing all of the exciting progress updates from RSRT, we were compelled to get back in the sharing mode. And Maggie needs you all to know what’s going on with her – it’s her way of making a difference in this world. It’s just one more way she gets to fight back.
RSRT has recently launched their own giving platform similar to a gofundme type of website. The difference is that 100% of the donation goes to the organization (minus whatever credit card fees there are), and you can be sure the money is actually going to the organization.
We’ve set up a page at www.rettgive.org/magnoliashope and set a goal of $250,000. It’s less than we need to cure this thing, but more than we currently have. Literally every dollar makes a difference.
Starting from zero after everyone’s spectacular generosity, getting us over the $100,000 mark the beginning of this year, is a tough thing to do. But watching those donations climb – seeing us getting closer and closer to our financial goal feels like we’re climbing over the mountain. With every donation, it feels like we’re getting closer to the real goal of releasing Magnolia from Rett Syndrome.
It’s something I think about every day. In fact, it’s what motivates me to write these blogs, make our videos, advocate for her at every step of the way. Waking up and accepting that my daughter will never be able to feed herself or change herself – that she’ll never be able to talk, hold a job, fall in love – it’s just not something I know how to do. The only thing I can do is wake up and think “what fight are we fighting today?” Some days it’s the school district, some days it’s medical providers, some days it’s Rett Syndrome itself.
But every donation we see is a reminder that we don’t have to fight this alone. And for that, we’re forever grateful.