Desiree Buettner
Born on Feb 18, 1998. My Cag count was 59. My mom had Huntington’s and my grandma did, They both died. When I was born I weighted 2 pounds I had to stay in the hospital until May. I lived with my mom until I was 2 or 3 then I went to foster care. Then when I was 4 my dad took me and we went to Texas. Then when I 7 I went to Iowa with my dad. She does in fact have other siblings that do have jhd, and some that haven’t been diagnosed. One did almost die. her mom has 3 other kids besides her… they have all been adopted… and couple live in a different state
She has other siblings from her mother that dont have the same father.
Then my dad met Lacy Nissen. (non hd positive) Then my dad and Lacy had my sister Patience. Then when I was 9 Lacy and my dad had my sister Hannah. Then when I was also 10 my mom died of JHD. Then when I was 11 my dad and Lacy had my sister Rylee. My symptoms are weakness in my legs and arms. Tremors, seizures, trouble with school, I didn’t graduate school, leg and arm pain and slurred speech. My head goes up and down and my eyes blink fast. Desiree was put in a nursing home December 2016. Her Dad visits her. She has a vivid imagination, especially when talking to her she knows how to make up stories.
About Desiree
I like to color, listen to music, I love Avril Lavigne and Carrie Underwood I love country too, and to sing. I like to do word search books. I like to read and play on my Kindle . My favorite food is chili and lasagna. My favorite animals are lion and tigers. I been really praying for a cure to come soon to everyone with HD/JHD. I really hope they find one so I can actually live my life. I want to be able to work again and maybe go to college. I want to be able to have kids. I have always wanted to have a boy and a girl one of each. There is so many things in my life that I want to do.
Desiree’s Bucket List..
- See Carrie Underwood before I die she is my idol
- same with Avril Lavigne I would love to see her
- I also want to jump off a plane before I die
- I also want to get a cure for this disease
- Go to a water park. I know it is shocking but I have never been to a water park. We have never went to a water park. I have always wanted to go to one.
- Go to Mount Rushmore. I have not always wanted to go there. I just started wanting to go it looks fun.
- Go to Sea World. I have always loved animals. I thought it looked fun.
- Go to the Grand Canyon. It looks like it would be so beautiful to look at. I think that would be a good a place to go and see.
You Can Email Her Dad At: desiree.buettner16@gmail.com
JHD Initiative 