Hello my name is Christy. Welcome to my blog!
This new and exciting journey for me is driven by my passion to help families like mine who are touched by EA/TEF. Passion has plunged me into creating this blog! I am so excited to share my blog with you and I hope you find it helpful.
What is EA/TEF you ask? Esophageal Atresia (EA) is a birth defect in which the esophagus, which connects the mouth to the stomach, is shortened and closed off at some point along its length. This defect almost always occurs in conjunction with tracheoesophageal fistula (TEF), a condition in which the esophagus is improperly attached to the trachea, the "windpipe" that carries air into the lungs. It is believed that these defects occur around the fourth week of pregancy when the digestive tract is forming. There is no known cause for the defects.
I was born with this condition in 1963 and have spent my entire life learning to cope with and handle the challenges facing individuals living with this rare birth defect.
For many years I have had a calling to do something to help others with EA/TEF, and in March of 2012 I was inspired to start the non-profit organization Christy's Courage. The mission of Christy's Courage is to raise money to support families challenged by EA/TEF by providing emotional and financial support.
Once I found the courage to step into this new adventure the people and resources I needed have manifested in ways I could have never imagined! Living my life with this condition has taken a great deal of courage on a daily basis. Through Christy's Courage I hope to inspire others with EA/TEF to live their lives fully despite the challenges they may face. I have not let my condition hinder me from going to college, having a successful career, and sharing 26 years with the love of my life. I want you to know that anything is possible for your life. All you have to do is dream it and take action! That's what I'm doing now by starting this blog.
In the future, please come back for more helpful information I have to share about life with EA/TEF. I look forward to connecting with you!
Hi Christy! I'm very happy to see your blog. My name is Nneka and I'm the mother of a 4 year old EA/TEF little girl. She has had and continues to have many complications with her birth defect. So much so, that we are in the process of trying to take her to Cincinnati Children's Hospital for more specialized evaluation and treatment. She has had pneumonia multiple times, and there is no explanation as to why. I too have been encouraged to start an organization to heighten awareness of this birth defect, as well as raise money for my daughter to go to Cincinnati Children's Hospital. We live in Maryland, and there is very limited medical expertise, information and resources available for families dealing with EA/TEF. We are in the very early stages of organization, but this is an issue that needs light shed on it. We are hosting a Walk-A-Thon on July 29, 2012 and invite you to participate as an adult EA/TEF success. I'm very encouraged with your story, and pray that my daughter will be equally successful in overcoming the many barriers related to her birth defect. I've also started a blog, http://babysisterssong.wordpress.com/, and invite you to check it out; and we also have a Facebook page called Baby Sister's Song, http://www.facebook.com/BabySistersSong, which highlights my daughter. Thank you for your story, it gives me hope.ReplyDelete