3.31.2015

Dance for a Cure

Today's post is more positive than my previous post- I just had to get all  my feelings out on my hard winter and now I am back to posting positve and happier post.

My friend Seth, the NYA Presidnent had organized a fundraiser for the HDSA called Dance for a Cure. I attended the dance along with my sister, her boyfriend, my mom. Stepdad, Aunt, Uncle, cousin, his 
wife, and  most of my dads family. Thank you all for coming and supporting me! It was a really amazing event. 

The turnout was outstanding for the first year having the event, and they had over 100 people there!! Events such as these were there are that many people out fighting to raise awareness and money for a cure keeps  my hope and faith in a cure alive. My whole reason for doing what I do, having my blog and sharing it with the world is in hopes of a cure. The fight in my friends in the HD community, such as Seth remind me to hold on. I believe in making the impossible possible and in miracles.


Seth had been planing his event to raise money for a cure of HD for his mother, she sadly lost her Huntington's Disease battle the week before his event. This made it that much more emotional for Seth and my thoughts and heart were with him the entire night. I just wanted him to know how beyond proud and impressed of him everyone I was with was because of how young he is an amazing event it was. I knew the first time I met him he was special and committed to his cause- finding a cure for HD. He won't stop fighting until there is a cure and neither will I!



๐Ÿ’™Help for today and hope for tomorrow ๐Ÿ’™
Alex




3.27.2015

Hard Days

So when I started my blog, I promised myself to share the good and the hard of my disease in order for it to be therapeutic for me and in order to raise awareness and be an advoacate.


Sometimes you have to take the good and the bad in life and with my HD and this week has been really hard for me. I'm dealing with hard realizations that most likely I am going to be alone in this journey. I have realized that I won't be able to get married and have a family as everyone around me is. That's a harsh reality for me a 24 year old to deal with becuase that's all I wanted in life and the HD is taking that from me.

Another hard thing for me to also deal with is that there are people who I believed would be beyond supportive to me have not been seeing me, or messaging me to see how I am. I feel as if some people deal by pushing me away when I need them to pull me in. I just feel extremely alone and lonely lately.

I do want to say there are people who are busy in their own lives but constantly making time for me and we are closer now that I am sick. I wanted to thank these people specifically- My entire Dads side, the Freniers,  my cousin Chelsie, my best friends Jenny and Emily, my Kansas family,  my sister friends, and of course my sister Elizabeth, her boyfriend Alex, my mom and Step dad Ken. I love all of you and appreciate what you do for me. You got me through this crazy winter!!



There are days when I feel so lonely here and deeply miss my friends that I say I wish I still lived in Kansas. I feel like all of my friends here have pulled away lately when I really need them. 


Let's just say I am feeling hurt by a lot of people in my life. I understand Its hard for them to see me but it's ten times harder for me to do this and fight this alone.  


I have had a lot of long talks with my mom  and sister about this lately and my mom said blog about It so I am so grateful I did. It got my thoughts and frustrations out.


Thanks for reading
-Alex