Hello, My name is Terry Leach. I am fourteen and a half years old. I was diagnosed with Juvenile Huntington’s Disease when I was five years old. I am told that I am the first case of Juvenile HD in San Diego. I was born June 30, 1997 at Naval Medical Center San Diego. I grew up normally, walking and talking, running and playing. When I was three years old I started stuttering my words a lot and having to repeat things. In the next two years it got worse and I also started tripping over my own feet and falling a lot. We found out in 2000 that my Dad had HD. Even though we did not want to believe it we had to get me tested too. I tested positive and in the following years have lost my ability to speak, and walk. I choke on everything so I had to get a feeding tube two years ago. That also helped me gain weight because I was only 67lbs. Now I am 95 lbs. I have required a personal aide to go to school with me since the sixth grade. My aide pushes me in my wheelchair to all of my classes and takes notes during class for me. He also helps me with toileting and does my tube feeding at lunchtime. I am now in the ninth grade and on the principals honor roll at James Madison High School. I wake up for school every day with a smile on my face. My mom calls me her Angel. My Mom is my best friend. She helps me get dressed for school every morning. I am not able to get up and around by myself. I need assistance with everything I do, like showering, brushing my teeth, getting dressed. I used to play video games but it has gotten too difficult to use the controllers. I do enjoy playing computer games though.  Everyone I meet says that I just radiate happiness. My family & I Volunteer and Support The HDSA in hopes that a cure for HD will be found.


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