Sunday, June 1, 2014

The end of Ichthyosis Awareness Month: My hopes

Yesterday brought the end of Ichthyosis Aawareness Month.  At the end of this month, I always reflect: Did I do enough to help raise awareness?  With over 1800 views on one blog post alone, I can only hope that there is at least one person who had never heard of Ichthyosis that has learned something about it.  I hope all of the advocates out there for Icthyosis have not only helped raise awareness for this disorder, but for many other things as well.  I hope that maybe because of hearing some of Ashlynne's story, people will stop and think twice before they stare at someone with a physical difference.  Or stop and think before they treat someone with a disability different than they would any other person.  It is my hope that Ashlynne can hold her head up high and not let this bring her down.  I hope that someday, she really does see that beauty really does come from the inside... It comes from the heart, not the skin.
I hope that this young lady realizes how truly amazing, and
what an inspiration she really is. 

Ultimately, I hope that Ashlynne becomes an advocate for herself someday.  Right now, she is very timid, and doesn't stand up for herself.  With awareness being spread, hopefully some day, it will be easier for her to do so.  As people become educated, maybe some of the stares will subside.  Maybe someone will be able to say, "Oh, she must have Ichthyosis".  Much like we do people with other well known disorders and diseases.  But while I want her to stand up, and be a spokesperson for Icthyosis, I don't want her to be a billboard.  I don't want her Ichthyosis to define her, or limit her.  I want her to help spread awareness, while leading the most normal, happy life possible.  After all, isn't that what we should all hope for our kids, happiness?

Thank you to everyone who has shared my blog posts this month, and who participated in Ichthyosis Day at the K. You guys were a huge part of helping our cause.  Your support means so much!

1 comment:

  1. The things you have explained these really make sense, I love this writing! Kids Ride Wild

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