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Alopecia Awareness- Charlie’s Story

30 Sep '16

The very first sign of my daughter having Alopecia was when she was seven years old. She had a dime size bald spot that would come and go. I was familiar with Alopecia because I was a hairdresser and we studied it briefly in school. I didn’t think much about that little spot until one day we were putting her hair up in a ponytail, and the whole bottom of her head was bald. I had no idea it could fall out so quickly. I gasped and prayed that she didn’t loose all of her hair. We didn’t know how to prepare a girl for being bald. We took her to several specialist in our area. There was no hope. The hair would either come back or not. The treatments they offered weren’t guaranteed to work and seemed painful. So, then it was time to approach this as a life long situation. She wore hats as her hair fell out every day. We got involved with Locks of Love which provided her a hairpiece. By the time the wig had arrived she was completely bald. I started my pep talks. Telling her things like, your hair doesn’t define who you are and, one day this can be used for good, all things happen for a reason.  I’ve only seen my daughter cry once over her hair loss. I walked into my bedroom and she was sitting on the floor holding her hair that she had collected in a baggie, crying. I wish I could say that she is confident and has accepted this. Just because she doesn’t cry about it anymore doesn’t mean she doesn’t hurt from it. She is now 15 years old and I have to say Beautiful!! With or without hair she is gorgeous. She won’t however, be seen in public without her hair piece provided by Locks of Love.  I truly don’t know where we would be without Locks of Love. Her hair piece is stunning. Most people can’t tell that it’s not her hair. They notice the false eyelashes and eyebrows but her hair can fool anyone. I still have hope that she will one day walk out of the house bald and beautiful. Until then we take it one day at a time praying for a cure. We do  joke about it a lot. Sometimes,  you laugh to keep from crying. She asked me once when is a good time to tell a boy that she is bald. I told her, whenever you feel comfortable saying it but remember, people love you for you not your hair. If some guy can’t handle the situation then he wasn’t really interested in your heart to begin with. There are girls that embrace their bald heads. I get excited when I see them. I asked my daughter once if it would make her feel better if I shaved my head so that she wouldn’t feel so alone. Her response was, I would never allow you to do that. I wouldn’t want you to feel the way I do. This is why awareness is so important. People need to understand that this is not just physical, it is emotional as well. We were able to participate in Locks of Love camp in June. It was the first time my daughter had met others girls her age with the same struggles. She is shy and it took her a couple of days to warm up but, she did. She compared notes with these amazing girls. They talked about boys, makeup, and how to draw on eyebrows. The camp was a wonderful opportunity to feel “normal”. As we go on facing this trail (and many others), we now know that, we aren’t alone.

Rachel, Charlie’s Mother

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