Alexandra Boothby

HD has shaped my life in many ways. It is so important to me, as a young person in the early stages of HD, who lost her father at age 43 to HD to raise awareness.

This is why I started a blog - to raise awareness of Huntington's Disease, and to share my  HOPE for a cure of this awful disease.

You can follow my journey at www.livingwithpassion90.blogspot.com

Here is a little bit about how Huntington's Disease has affected me at a young age: 

-It separated my family, when I was 10 months old, making me only seeing my dad twice a week.

-It made two little girls cry when they would come home because their dad was deteriorating before their eyes

-It made two little girls, who lived across the country, not be able to talk to their dad on the phone because they couldn't understand him due to his loss of speech function

-It made my Dad, the strongest man I ever knew, whimper away in front of my eyes and eventually lose his battle at age 43

-It made a little girl, just 12 years old, SCREAM when her mom told her Dad had a few days on Christmas Eve

-It made my heart ache because those damn Patriots reminded her of her Dad.

But my dad's love, strength, and passion now lives inside of me.

And of course, a little bit about how Huntington's Disease has now affected me now:

It has now made this 23 year old, whose ONE prayer, has ALWAYS been, "Lord bless me with a baby".
For as long as I can remember I have had a deep, longing, passion and desire to be a mother. It was what I have always strived for, craved for, longed for, dreamed to one day become a mom to a large family. However, I have made the decision that I am showing signs to early to bring a child into the world. 

A decision that breaks my heart.

However, my thought process through that heart break, was that it's okay-I will just continue to teach my students with Autism, and they will be like my own children and I will love them more than they know. But finally HD, said "oh no you won't!" So after 5 years of college, and 9 months of the best job I could have ever asked for I had to quit (see just how hard that decision was here

HD has made me very fearful, nervous, and frightened for my future. But I know I have my Dad's strength, and a huge support system. This is why I get up everyday and live for today. I've told her doctors and genetic counselor  that she was ready to kick it in the butt! 

I can't do this alone but I have HOPE, that YOU can help me teach again and become a mother by raising awareness, and donating.

Huntington's Disease has made me believe that miracles do happen.