Why Girl Power 2 Cure, you ask?

Why did we join Girl Power 2 Cure and why do we love them so much?

Best to start from the beginning. 

When we were first diagnosed, we read about the old-school literature of Stages I through IV of Rett Syndrome, which in a not-so-scientific nutshell discusses our daughters normal development, regression, stagnation of skills, and rapidly deteriorating stage until the unspoken happens.

Where was the hope in that? We first brought Anna home from the geneticist and were under the impression that Rett was a death sentence. 

Hope and joy were hard to come by. Full disclosure: on Anna's hard days they still can be, but nothing is as black as those darkest days. There are days now that Spring has arrived that I am at the park with the kids and I see a healthy girl Anna's age running, talking, playing... And I think, "Only 1 gene separates my daughter from you." Sometimes I go back to throwing stones at them but other times I can get through it by telling myself their mothers are going to be jealous of me when their girls are 16 and off riding in cars with boys on Friday nights and Anna and me are having a movie night cuddled up on the couch. Ah yes, bargaining! Works every time.

When we found GP2C, the "girl power" confused me at first. I was never a "girl power" kind of gal. But as I perused through their website and stumbled upon "Meet our girls!" I found myself in a symbolic garden of hope with beautiful photos of families and their girls, their moms, their stories, how old they were when they were diagnosed, what has helped them, what hasn't, where they were from.... Not only did I become a believer in "girl power" but here I was looking at these flowers - lovely gals - planted all over the country! How could we not be a part of this? I have become a girl power kind of gal who now has a flower power GP2C bumper sticker on the back of my car. The cynical me is gagging right now. But she doesn't much exist anymore.

We first created a page for Anna then slowly got involved. Slowly. I was still figuring out how this Rett thing was possibly curable and what mouse model they were talking about. I was a little threatened at first and typical type-A thoughts flooded my brain: "if we do a fundraiser it has to be the biggest one ever!" or "how can we raise $1 million dollars?"

Throughout the last 12 months, we have had the absolute pleasure of meeting the most awesome Girl Power moms and their girls. 

We have to of course include Rett specialist and friend, Dr. Sasha.
This photo was taken at Christmas-time, incase the colors didn't tip you off, about 6-months after we first met shortly after Anna's diagnosis.

The first fellow-Rett-mama introduction was in the courtyard of Montefiore Children's Hospital, where Anna and I met Ingrid and Sarah. Then a few weeks later, we met Bridget and Annie in the hallway of Montefiore's Rett Syndrome Center. "They're from Michigan," our doctor Sasha said. The next day they were at our place having brunch, and Ingrid and Sarah were on their way to join us all!

Ingrid & Sarah, Bridget & Annie, me & Anna
July 2010

A few months later, the Brooks' were on their way to Montefiore and we first chatted on the phone about their upcoming visit. As usual, there was something about another GP2C family and we hit it off instantly.

It took everything in me to not be too vain to post this, since this was in October 2010, roughly 30 pounds ago. But living proof we've met the Brooks!
Photo credit: Kristy ;)

Then, a few months after that, we met Terri and Abby! We were too busy drinking wine after the kids went to sleep to take any photos during their December 2010 trip, but thankfully I got to hang with my sister-from-another-mother again in January, when I also got to meet the famous Kelly! (I am still waiting for my visit to Indiana to meet her adorable Brooklyn and Boston.)

The fabulous foursome + an adorable Peter Hurley

So.... Why do we love Girl Power 2 Cure you ask?

1. The amazing women - mothers and girls - affiliated with this organization.

2. The support they give through the hardest days.

3. The hope and positivity they provide and that we need to live with Rett Syndrome.

4. The amazing research they support at the Rett Syndrome Research Trust, spearheaded by another amazing mama on behalf of her equally inspiring daughter, Chelsea, and the Rett girls & women all over the world.

Monica from RSRT

So, here we are. Our first fundraiser for Girl Power 2 Cure, for Anna, for all of our friends, and for the HOPE we have that our cure is coming, and that Anna will one day do everything we all take for granted.

Monica told me something I have never forgotten. It was during a late-night phone call last summer when I couldn't believe Anna had gone from feeding herself biter biscuits to requiring a feeding tube. She said, "A g-tube isn't forever. Once our cure is here, we can take out our daughters' feeding tubes and within 3 days the hole in their stomach's will be closed, and all that will be left is a small scar." 

From that point forward, we looked at the feeding tube as a way to keep Anna alive and well, until the day comes we can take it out.

All of our fundraising information can be found here. 

There is exactly 1-month left in our fundraising campaign leading up to the big event!!