Monday, August 19, 2013

Raising Awareness in Our Community

Evan and I participated in a news interview at our home in May. I have been hesitant to share my story with newspapers or news stations since I was concerned they would pitch our story in a dramatic way to gain viewers or readers. The great thing about blogging is that it is always my words and my point of view. I was approached by a news station in southern Connecticut through our Tiny Superheroes crew. Though incredibly nervous I accepted the offer to help raise awareness for Evan and the FIRST Foundation.

In the beginning of May, a husband and wife team joined us in our home to see what a typical morning was like for Evan. We chit-chatted for a while before recording began and Evan was hamming it up from the start. It was a busy morning filled with a bath, breakfast, multiple Aquaphor applications, walker practice, music therapy, play time and then an interview while keeping Evan happy and distracted. Joe unfortunately could not participate as work obligations, again, became a priority. The morning flew by and hours later their taping was wrapped up as Evan got ready for a nap.

I was anxious to see our story. I wanted to see what clips were included and what parts of our interview were shown. I was very happy after seeing the final product and impressed with the quality and professional nature of the clip. I was pleased that everything was positive, though it was hard for it not to be positive since that is how I view our life with Evan. I know only so much can fit into a short video clip but we did discuss Tiny Superheroes and the FIRST Foundation during our interview as well.

By no means do I expect to gain viewers or popularity by participating in this news interview. I would never think of Evan as "famous" since his disorder shouldn't be something that would ever make him "famous".  I had one mission and one mission only, to raise awareness for Ichthyosis. I am glad the interview was focussed on Evan and Evan only. I am glad they did not link my blog or even mention I had one. I know that this blog is a great resource of information to raise awareness and support FIRST but if people are really interested in learning more they could research their time into it or go to FIRST's website which was included in the news clip.



Enjoy on News 12 Connecticut's site:
http://connecticut.news12.com/news/goshen-toddler-living-with-rare-genetic-skin-condition-harlequin-ichthyosis-1.5900009



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1 comment:

  1. Very nice! Glad your trepidations were unfounded!

    ReplyDelete