23 year old Angel
Elli developed totally normal. She hit every milestone. But once she started 3rd grade learning became very difficult. We worked with tutors… we worked for hours on homework. Then in 5th we had her tested for learning disabilities and they suggested she may have Huntington’s Disease. Well, I was completely unprepared for that. In fact I was unaware that it could happen to children. At that point she was playing soccer and wasn’t really able to keep up. So she tried volleyball and then cross country running. She struggled in all sports. I just figured she wasn’t very athletic. But when Elli was entering high school in 9th grade everything really changed. Her speech was really beginning to change and become slurred and school was so hard she could not keep up even in highly modified classes. That’s when I decided to go to the local conference HDSA was putting on. After attending the list of symptoms was long…. I has no idea her little humming she often did was actually Chorea. We then made the decision to have her tested. We are so blessed to have Dr. Martha Nance here as our specialist in JHD. She had taken such good care of Elli!! We also went to the University of Iowa to participate in the JHD study the are doing. So for now we cherish each day. We made as many memories as possible and we love each other deeply!! And we trust in God’s plan fully knowing He has us and had a special mission for Elli!! February 6, 1998- May 10, 2021.
Her favorite colors were hot pink and lime green. She was almost more like a 10 year old in a 16 year old body. She loved, loved rocks. Everywhere we go she was on the hunt. She would’ve like to be a geologist one day. She also loved to color and do perler bead creations. She was totally into cheering on our local sports teams especially the football team!! The school here had totally embraced Elli and even changed the curriculum to focus more on Huntington’s Disease!! Elli was a total go with the flow lady. She was happy always and loved to just be hanging out with family or friends doing whatever. She loved music… especially Austin Mahone. She loved to watch movies, over and over again. She loved to go to the cabin and play campfire story telling games.