BENEFITING: GIRL POWER 2 CURE INC
ORGANIZER: Girl Power
HOURS PLEDGED: 50
Fact: Having two girls with Rett Syndrome is rare. There are a few instances of twins and a couple of families world wide with two biological children with Rett. I even have friends blessed with one biological and one adopted Rett girl!
My story is a bit different though... I too, have 2 Rett girls.
Sophia is 14 years old. She did all the "normal" baby things including crawling, feeding herself, walking (with help) and lots of baby talking. Around 1 year old, she began to loose many of those functions and skills, and gaining new ones became increasingly difficult. Sophia no longer walk, talk, nor has purposeful hand use. She struggles from regular, near daily seizures. She can no longer eat by mouth, nor atttend school. She is very medically fragile. The laundry list of things she can not do is long. But the things she can do- is equally long, and amazing! She is so SMART. She hears you. She sees you. She is silly, and sassy, and so very loving. Because of Rett Syndrome, she trapped in a body that refuses to work.
I also have a beautiful "bonus-daughter", Emma who is 17. Emma is Mike's oldest daughter, from his first marriage, so now is is mine, too (we married July 2013.) Emma walks, can climb stairs, rides the bus, and goes to school. She eats entirely by mouth, and even drinks from a cup. Sometimes, Emmy likes to get into stuff (usually looking for food) but the fact that she CAN get into stuff is pretty amazing in itself! She's sweet and sassy. She's silly and mischievous. She's smart. She loves food, her siblings, and adventures. She can pull of crazy hair and the messy bun look like no other girl I know!
Emma and Sophia could not be more different.
However, since they both have Rett Syndrome they are an awful lot alike, too! Rett Syndrome steals our girls' ability to talk, not their ability to understand. They see you, they hear you, they understand you~ and they would love to tell you! They are both trapped in bodies that refuse to work in the ways they need and want them to. Both Sophia and Emma suffer from seizures. They both have an AhHhHh.Ma.Zing! laugh (the kind that you can't help laughing along with.) They smile from their heart, and manage to warm yours each time they do. Sophia is on the VERY severe side of Rett, but both my girls are at high risk for lots of scary things. Pneumonia's, broken bones, and sudden (unexplained) death in their sleep are just a few of the scary thing we have to be prepared for. Both my girls are a gift, a blessing. They teach me things I didn't know I still needed to learn. Like patience. And to take a breath and THINK before I speak. They teach me tolerance, and endurance. I have seen Sophia suffer more times, in more ways, then a parent should ever witness. But I have also seen her reacting with strength, dignity, and grace. Traits I'm not always sure I possess... My girls keep me busy, but they also make me a better mom then I ever knew I could be.
Girl Power 2 Cure wrote -
Girl Power 2 Cure is a dedicated and vibrant nonprofit organization leading a movement to end Rett Syndrome, a severe neurological disorder that primarily affects girls.
We are here to respond to the urgent need for support , education, mainstream awareness and treatments. For us, change starts with a simple belief - that girls losing the ability to walk, speak or use their hands for a lifetime is unacceptable.
Our inspiration is our flower: always in bloom with hope and positive energy, ready to grow for our cause worldwide.
WHAT WE DO
We educate and raise awareness. Because we must speak for those who can't.
Through webinars, events, and awareness campaigns, we have inspired a movement of thousands, and need thousands more.
We support families. Because they are the heroes, tirelessly caring for their daughters, sisters and granddaughters.
We open our arms to every family, meet them where they are and provide them with the resources and support they need to fight for their daughters and for a cure. From helpful product reviews and hands-on training to fundraising efforts, we walk with them on the journey that many of us have made ourselves.
We fund research. Because the world needs these girls.
They are brave, they are bright, and they are beautiful. We cannot rest knowing Rett Syndrome is curable. We are determined to see the girls and women who are suffering live better lives. Through a strong partnership with the Rett Syndrome Research Trust, we fund research that is crucial to developing treatments and a cure.
We inspire action. Because change starts with a simple belief - that girls losing the ability to walk, speak or use their hands for a lifetime is unacceptable.
Our flower is our brand, the cornerstone, always in bloom with hope and positive energy ready to grow wherever there is inspiration to fight for our cause.