Shocking JHD Stories

Patricia Romero-Mabry

I went in there today as I do just about every other week with Bryan, we get to the entrance and Bryan gets into one of the motorized chairs as he has a difficult time walking these days due to the progression of his HD, well Joe the in-compassionate guy at the front proceeds to ask Bryan if he really needs the chair (BTW there are about 4 more just sitting there unused), I get up there and say excuse me what did you just ask my son, he then tells me what he said then tells me well why does he need a chair, I just saw him walking in the door. I said justbecause someone does not look disabled doesn't mean they aren't. I asked him ifhe asked everyone that and if he had ever heard of The Americans with Disabilities Act. Talked to the manager and was just as ignorant. I was so mad, I will no longer do business with that store and maybe take my business to Costco. Do I really need to drape a banner over my son that say's I have Huntington's Disease????? No wonder people lose it!!!! So sick of ignorance already.

Jacey Mukka

Hugging Dotti and Sparkle Karli Got Me and She Kissed The Heart and Picked Them Out.. I was Holding Them as Tight as I Could Wearing My Special Glasses For The Light and Went Into the Grocery Store and a Worker Just Stared Like Her Eyes Were Glued To Me I Was So Uncomfortable My Body Started To Twitch My Shoulder Jerked It's Crazy and if remembering today wasn't bad enough the pain i have everydayand the disease that just doesn't care a UTI wtf!! What did I do?! C'mon It's Uncalled For my eyes started wandering in the store and the lady says 'what are you looking for?!' 

Denise Hudgell

While I know that Aidan's symptoms are visible, it is still hard to hear from complete strangers. Tonight at Sis' softball game, a very, well-meaning concession stand lady told me she was concerned about Aidan when he came to the stand twice & both times he seemed pale & had tremors in his hands. I explained to her that he has JHD & she was very sweet and I think her concern was genuine. I just wonder what others think, but don't say. I worry about kids making fun of him (he has told me that kids have made fun of the way he runs). I hate JHD!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

Welcome To Where You Can Read These Kids Stories And Learn More About JHD
%d bloggers like this: