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Friday, March 9, 2012
Welcome To Patriotic Peacock.
Why Patriotic Peacock? Peacocks are the most brilliant and colorful birds. They have the ability to be small and meek but when need be, they can be so full, elegant and as bright and beautiful as anything you have ever laid eyes on. That is exactly the same as our little girl. We are also a military family, my husband having served in the United States Army for going on 12 years with 5 combat deployments under his belt already, Thus the Patriotic.
Our little girl, Fally is the inspiration behind this blog. She is a 2 year old firecracker. She also has a rare genetic connective tissue disorder called Ehlers Danlos Syndrome. She does not let this disease define her, in fact she is far exceed the expectations that her medical providers have set for her. She is the most amazing spirit and will do things her way regardless of her limitations and she smiles and giggles while doing it.
With her condition comes chronic pain, severe hypermobility which I will explain in updates later on as I transfer posts and information from a previous blog that I had used for my personal interests and not for her cause. Our goal is to bring education and awareness to the interwebs and anyone who may cross our path in the meantime. Ehlers Danlos has ZERO cure and ZERO treatment. There is absolutely nothing in this amazing medical world that can make my child better, nothing that can take away the fear of pain everyday, or take away the worry in regards to rupture arteries or brain herniation. Those are just a few of the known side affects of this disease. Again, no treatment and no cure. All we can do is medically support each side effect or injury that is related to her condition as they arise. However, it's like waiting for a time bomb to go off. You don't know when, you don't know how and you don't know to what severity it is going to happen. It could be as simple as a dislocated shoulder to an Aortic Rupture. It's a fear that no child, no parent, no adult should ever have to live with.
We have assembled a fundraising team for research called FootSteps For Fally. You can find her on Facebook so please feel free to click this link and follow her and share it with your friends and family. THe more we can share and get the word out there, the better chances of finding a cure.
FOOTSTEPS FOR FALLY
So join us on this journey as we struggle, we educate, we cry and we cheer, we fundraise and train all in the name of our baby girl and every other child affected by this debilitating disease.
Our little girl, Fally is the inspiration behind this blog. She is a 2 year old firecracker. She also has a rare genetic connective tissue disorder called Ehlers Danlos Syndrome. She does not let this disease define her, in fact she is far exceed the expectations that her medical providers have set for her. She is the most amazing spirit and will do things her way regardless of her limitations and she smiles and giggles while doing it.
With her condition comes chronic pain, severe hypermobility which I will explain in updates later on as I transfer posts and information from a previous blog that I had used for my personal interests and not for her cause. Our goal is to bring education and awareness to the interwebs and anyone who may cross our path in the meantime. Ehlers Danlos has ZERO cure and ZERO treatment. There is absolutely nothing in this amazing medical world that can make my child better, nothing that can take away the fear of pain everyday, or take away the worry in regards to rupture arteries or brain herniation. Those are just a few of the known side affects of this disease. Again, no treatment and no cure. All we can do is medically support each side effect or injury that is related to her condition as they arise. However, it's like waiting for a time bomb to go off. You don't know when, you don't know how and you don't know to what severity it is going to happen. It could be as simple as a dislocated shoulder to an Aortic Rupture. It's a fear that no child, no parent, no adult should ever have to live with.
We have assembled a fundraising team for research called FootSteps For Fally. You can find her on Facebook so please feel free to click this link and follow her and share it with your friends and family. THe more we can share and get the word out there, the better chances of finding a cure.
FOOTSTEPS FOR FALLY
So join us on this journey as we struggle, we educate, we cry and we cheer, we fundraise and train all in the name of our baby girl and every other child affected by this debilitating disease.
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