This past weekend a mom of a WHS kid stumbled upon a video that was posted on YouTube by Capstone College of Nursing at the Univ. of Alabama. This video was intended to be an educational video created by students about genetic disorders. They used a sleepover story telling scene and described our children with WHS as creatures that were cursed by a witch causing all these horrible physical features. Just typing that doesn't even get close to how horrible this video was. I say "was" because within the first hour so many of us WHS parents complained that it was removed. Thank goodness. All I could imagine is a newly diagnosed parent searching the Internet and finding this horrible video.
What the creators of this video didn't realize is that the WHS parents are a tight group. We talk though Facebook, blogs, a Listserv, etc. We have rallied together and got the video removed and also have flooded the Dean of the College's office with calls today.
I was horrified by this video that I too called the Dean's office. I was pleasantly surprised that I received a return call from the Dean herself. I spoke to her for several minutes and she personally apologized and promised that this matter would be handled promptly.
As much as a was VERY upset about the video, I was very happy to have the ear of the Dean to express my feelings and explain how hurt we were as parents that nursing students could view children this way. These are the same people that we trust our children with for care.
What this whole experience has shown me is that we have an absolutely wonderful group of parents and we will fight for our children. Our kids are kids too, they may have a diagnosis but they are kids too. All of them adorable, beautiful children. I hope the students of this class and their faculty learn a life lesson from this situation. I know they will never post an offensive video about our children again. I plan to send a thank you note to the dean thanking her for her prompt response and true understanding of the situation. Along with that a picture of my princess to show the class how she is not a "creature" as depicted in the video but a regular kid. (Very cute regular kid!)
WHS parents, You guys are awesome and I'm so proud of each and everyone of us for fighting for our kids. Love ya all!
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And I love YOU! WHS parents are hardcore. I am proud to be among the best parents in the world!
ReplyDeleteWait did that comment make it sound like I was bragging about ME! Ha! Can't figure out how to word it correctly - its 12:30 am but you know what I mean!
ReplyDeleteI found out that my daughter has WHS a little over a month ago. Naturally, I went on the internet to know more about what my daughter has. I saw the video that you're talking about. It didn't help me find the answers I was looking for. I'm glad no longer available!
ReplyDeleteI am a mum to a 17 month, her name is Ellie and she too has WHS. I would have been horrified if I saw this video... Well done in getting it removed... And you are right, us WHS parents are a tight nit group. In the last few months I have connected with so many through my blog and on facebook. Its a great feeling to have others around you even if they are miles away, that understand what you are going through..
ReplyDeleteP.s I hope you dont mind if I follow your blog. Feel free to follow mine. I love being in contact with other WHS parents
ReplyDelete