My name is Desirae I have a rare degenerative disease called Huntington’s disease. I tested positive at UCLA in 1995. My dad was diagnosed with HD in 1991. I lost my father at age 48 to HD on February 7th, 2007. My mom took care of him every day for 16 years. At the end he was 65lbs, was under hospice care and had to eat through a feeding tube. He is my HD Angel and I am his HD Warrior that will prove to him he didn’t die in vain.
I also have 3 siblings. One sister is 34 and has tested positive. She also has 14 year old daughter that is at risk. The other sister is 30 that has 5 kids has tested negative. Lastly, sadly my 33 year old brother tested positive for HD on 9/26/08. He has no kids, but his girlfriend is pregnant. It is SO UNFAIR that 3 out of us 4 kids tested positive for HD. No mother should have to go through life with 3 terminally ill kids! Not to mention my 2 kids, Brendan 16 and Ariel 14, have a 50/50 chance of inheriting it from me.
I am 35 years old, symptomatic, taking medication and on disability. This does NOT define me. I’m not dead yet and plan on living as such. I want to make my dad proud so I do my part by getting local restaurants to have HD Fundraiser, participate in HD Clinical Trails, be the support that my HD friends & family need, have a Cure HD license plate, have a Cure HD tattoo on my neck since 2006, having a yard sale to benefit HD. Since 2006 I have been the Team Captain for Team Papa in the HDSA OC Chapter Walks for a Cure. I Want my kids to know they can make difference by being proactive.
To top it off I have even Skydived 4 HD three times so far. In 2010 on what would’ve been my dad’s 52nd birthday. Second was in 2011 with my brother on Armed Forces Day in honor of my dad who was and will always be a Marine. Lastly was my 3rd Skydive 4 HD on May 20th, 2012. It would’ve been my parents 35th Wedding Anniversary. Last year I was eternally grateful to attend the HDSA National Convention with my husband, mom and brother by getting a Lundbeck Scholarship.
My priceless husband Jesse and I have a happily dysfunctional family that live in San Gabriel Valley. I have a solid foundation of friends & family that make me want to fight the good fight. Without them I would be lost and have no fight in me.