Friday, October 1, 2010

rett syndrome awareness month

it's strange to me that something i knew nothing about two years ago has become such a major part of my life. i live and breathe rett syndrome. and it wasn't my choice. it wasn't leah's choice either. but such is life. 

however, i'm almost daily brought to tears because of the kindnesses shown to our family on a regular basis. family, friends and even strangers have stopped to listen, to help, to heal. so many have shown such a genuine interest in leah and her well being. it's hard for me to explain the gratitude in my heart for acts of kindness big and small, seen and unseen. 

i do have to teach a lot of people about leah. there are days that it feels all i do is question, explain and teach. but i have a feeling that leah has a lot more to teach me than i can ever teach her. 

october is rett syndrome awareness month and hopefully i can help spread the word about this horrible disease as well as the promising advances in research revolving around it. 

first off, the pepsi refresh campaign
we WON! happy awareness month to us! after four long months, we finally held our first-place position and were awarded $250,000 from pepsi, which will be matched, totalling $500,000 for our angels. hopefully this the first of many blessings to advance the research. thank you to so many friends and family {and their friends and family...} who voted and texted and posted...for four months. we more than appreciate it. 

second, the power of the purple card
leah is part of an organization called girl power 2 cure. this organization was created by the mom of a girl with rett syndrome and simply seeks to raise awareness for rett syndrome and funds for research. each girl who is a part of the program can have a "purple card" to help others understand this disease and what leah struggles with every day. it explains that she's a smart girl and understands everything going on around her - she just can't get her body to do what she wants. if you'd like one of leah's purple cards, let me know! we'd love to spread the word. feel free to visit leah's page or leah's blog to learn more about her.

my thoughts are jumbled right now. i'm full of so many emotions and anticipating a weekend full of meetings with specialists from all over the country who are interested in our girls. and looking forward to the first-ever northern california strollathon to benefit the IRSF and Katie's clinic. can't wait to tell you all about it...

4 comments:

Heather said...

This is one big comment on the last couple of posts. The zoo looks like a blast and Leah is so cute, even with a sad face. I am going to carrie and SO excited! Apple picking looks like a blast, it is a fall must do! And you guys just looks like you are up to a lot of fun!

ed and kelli said...

yay!!! i definitely want a card.. or two or three to pass out:) love you bean. wish i could be at the strollathon. perhaps i'll go on a walk just for you!

The Jake Clines said...

If you have an extra card I would like one. With 3 girls I will definatly get the word out. You are so amaziing!!

Shannon said...

I hope your walk went fabulously this weekend, Maren. You guys are pretty much my heroes. Pass the cards, please...