Elli was born on a cold day in February. She 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 has 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 make as many memories as possible and we love each other deeply!! And we trust in God’s plan fully knowing He has us and has a special mission for Elli!!
Her favorite colors are hot pink and lime green. She is almost more like a 10 year old in a 16 year old body. She loves, loves rocks. Everywhere we go she is on the hunt. She would like to be a geologist one day. She also loves to color and do perler bead creations. She is totally into cheering on our local sports teams especially the football team!! The school here has totally embraced Elli and has even changed the curriculum to focus more on Huntington’s Disease!! Elli is a total go with the flow lady. She is happy always and loves to just be hanging out with family or friends doing whatever. She loves music… especially Austin Mahone. She love to watch movies, over and over again. She loves to go to the cabin and play campfire story telling games.