Sunday, September 23, 2012

The Message

Today's gift is the message.

I would not be where I am personally and physically if it were not for my daughter who lives with Rett Syndrome. I feel after spending the weekend with my fellow Board Members of Girl Power 2 Cure, I need to share the message....the message of my passion for my daughter on this Rett journey.

As I mentioned in yesterday's post I promised my daughter when she was diagnosed I would never give up on her. In trying to make her life better and the best it can while living with Rett Syndrome (this is my passion), I am not only making my life better, but also others. Others who know my daughter or girls like her and others who do not know her or have even heard of Rett Syndrome.

Girl Power 2 Cure is an incredible organization and I want to share my passion of this organization with you. Of course, I am involved with them because of my daughter....this is a given, but being in a conference room talking about the "bigger" picture you realize what an amazing opportunity Girl Power 2 Cure is for all girls...Rett Syndrome or no Rett Syndrome.

Girl Power 2 Cure offers family support to families when their child is diagnosed with Rett Syndrome and the families feel helpless, hopeless and alone. The support comes from other mothers who have also walked in your shoes. Girl Power 2 Cure helps you plan events to raise awareness AND funds for research, as research is the ultimate way to a cure. But Girl Power 2 Cure is much bigger than this....just listen to yourself say the name out loud. Go ahead, say it now....Girl...Power...2...Cure.

The word "girl" is not only talking about the girls with Rett Syndrome as they need support...they need hope...they need a help them change the world. The word "girl" also means the "typical" girls in the world...their mother, their sisters, their grandmothers, their aunts, their cousins, their friends, their peers, the girls they don't know...the possibilities for these other "girls" is endless. Together...Rett Girls and Non Rett Girls are going to come together to cure Rett Syndrome.

However, what the Non Rett Girls are doing by joining our mission is more than helping to find a cure. They are first and foremost believing in the girls who live daily with Rett Syndrome. They are doing what comes naturally in life to us all, they are forming friendships. Everyone needs a friend to walk through life with, but girls who are suffering, girls who need support, girls who need help, girls who need a voice...they definitely need a friend. They need a friend who can provide help, give support (support on a friendship level), and who can help be their voice until the day comes when they can speak for themselves.

The Non Rett Girls are teaching the world about the Rett Girls and how they are the same, but Rett Girls have been given different daily challenges to live with from mild to severe. They will become understanding, compassionate, and patient young ladies and women later in life due to their work with a friend with Rett Syndrome. They will not take life for granted, but truly learn to appreciate every thing they can do...for themselves. In today's world, you don't see these qualities in our youth all the time. We are a society fixed on going and doing and while we are going and doing, we are attached to our phones, iPods, iPads and the level of daily interaction between each other has been lost to texting.

If I didn't have a daughter with Rett Syndrome, and I found out about an organization like Girl Power 2 Cure, where my daughters could be a part of a movement to help girls who are suffering, I would jump on the opportunity. I would jump on it...first, because I always teach my children what it means to be appreciative. I never want them to not appreciate anything they have or can do. The best way for them to learn is to show them....physically...someone else whose life isn't as easy as theirs.

Second, I want to teach my children from a young age about their time to help someone their money to help someone their support to help someone else. Teaching philanthropy at a young age helps shape our children for the future. Life isn't about ourselves and being selfish, it's about helping one another.

Thirdly, how incredible would it be for my children to be part of an organization who helped be part of a bigger mission to cure a disease? Just writing this gives me goosebumps. Goosebumps because it is going to happen...a cure. Rett Syndrome research has come a LONG way in a SHORT amount of time. The gene which causes Rett was found in 1999....they REVERSED Rett in mice in 2012 they found bone marrow transplants show VERY promising results....the question is no longer will there be a cure, it is now when will there be a cure.

I hope after reading this post you can not only hear my passion for my daughter and Girl Power 2 Cure, but feel it. Girl Power 2 Cure is about making a difference....a difference in the life of a girl suffering from Rett Syndrome and a difference in the life of a girl who is helping the girls who are suffering.

Instead of quotes for today's post, I would like you to go to and learn about Rett Syndrome, learn about Girl Power 2 Cure, learn about the girls who are living with Rett Syndrome. There is a place to click which reads, "Meet the Girls"...go ahead meet them. I know you will love them and I know they will be honored to share their story with you. Just like two typical girls are not alike, two Rett Girls are not alike.

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