I guess i’ll start from the beginning because I feel able to type this and want and need to..
It all started when I was in middle school, my teacher used video camera with a program and green screen. He recorded the toothpick bridges falling etc and made great videos and great for memories. Even the music in them was amazing.
I got diagnosed at 13 years old. My Mom had recorded footage of Karli already, but I wasn’t tech savvy so I had no idea how to use that, yet.. I wanted to get tested early especially for the care you need and the Make-A-Wish you can have before you get too sick for it. I asked for a live aid concert to raise money and awareness and that didnt go over too well, it was too big a wish and the alternative would’ve been a local band thing and it’s not the same. Hawaii would’ve only been for a short time and I wanted something that would last forever. I chose an electronic shopping spree to get the video stuff I needed. I went on dell and picked things out and sent the list to the person helping me, I don’t think they expected a list within the price range lol.. They went over the top with the footage camera zune printer everything and I didn’t know it was coming so soon. We got back from Karli’s far away doctors and it was there. Ecstatic. Even my Uncle helped set it up with me. I didn’t know how to use a laptop like this!! I made my first video of my entire family at camp it was a starter video not even close to being fully right to me, but that was my first video it was great back then.
I made my first Huntington’s Disease video, The Real HD. I heard someone from Orange County, CA was okay with having a baby because if it was sick a cure could be there before it died from the disease. I learned noone knew that Juvenile Huntington’s Disease existed. I didn’t care much about detail I threw together footage to show everyone it’s real, it exists, look at this. People loved it so much spread it everywhere, that’s when I made The Real HD The Sequel etc.. I really wanted them to see the progression and how it works via my point of view really.
I’m going to admit yes, the juvenile huntington’s disease initiative started as a research project to get the kids what they needed, especially the scale and we had such amazing researchers who knew what was different with kids and adults and when the project started going down not working out sadly, I never removed the initiative part off of the name.
I used to have donation buttons on the site that went straight to the kids and parents accounts, I changed it to email instead. There was a lot of trial and error. The community of jhdkids was basically Virginia lol.. The community grew and I learned how to make groups hd family jhd family etc.. We even raised money through selling bracelets and bookmarks etc.. We even had a fundraiser at a bowling alley/arcade. First and Last. We do also have business cards now though too. There’s been donated books and things like that very fun to give to them. Keri Smith is very sweet.
The website jhdkids and the logo was Laura Hillard. She taught us how to work everything and going through names with us, she even paid for it for awhile. She is talented. Of course none of it started as big as it is now, things don’t start big like that. Where there’s a need there’s a way. I changed it to just for the kids, no more research notta. This is just to help these jhdkids.
I added and changed around so much, figured out better organization and realized you whats what.. It’s probably still growing. I played the videos at the nya talent show at the HDSA conventions. They showed a video I made special for the Curtains Up For A Cure broadway event we got to go to, so many amazing memories.
Karli and Daddy passed away and I played a video and it hurt so bad watching it at the talent show. Moved so many people like the truth should, and didn’t stop making videos. When I started to get sicker I started a jhdvlogger youtube channel to show my progression, and talk to people about things, a video blog. When it failed I worked on my website, this website more and more about my memories and what I went through/ go through.
There’s a lot of concern in jhdkids, because everyone’s different. Do I keep the angels and kids that havent passed together? I’ve tried both and found together works best. I found out what an amazing community it truly is when they let you show the worst of what happens through their children certain ones of course with permissions. People started to ask how to get on here.
I got more group admins because I can’t always watch them. My Mom’s learned how to run jhdkids and their updates on the facebook page. She does it for me when I can’t, which is more and more and more. I can’t manage everything I could. I do what I can for the children because God gave me a talent for this and such a deep love for these jhdkids that every time I help them I love it. I’m not adding more jhdkids at the moment because I need to focus on Mom learning more and everything that comes with doing something to help kids without the changing of collages etc.. I still love ALL of the kids with jhd and their families even if I can’t add them to jhdkids, they’re still there and I love them all. My Mom has taken up making videos also, which is great something I really wanted her to do. She’s making a difference in this world even if she didn’t choose this route. I want jhdkids to live forever. My losses shouldn’t be theres. They are all very understanding and compassionate of this though. I’ve gotten awards but honestly I didn’t think what I was doing was hard enough to earn one. The most treasured things out of this are Jake’s convention robe everyone signed and he even personalized it for me, such a blessing. The metal Matty gave me that I didn’t earn, but it still means a lot. It all does.
My older sister went to Hawaii for her wish and I couldn’t even go because I’m too sick to travel. I soo wish I could’ve went with them and I think Erica wishes the same.
jhdkids first started as research project which it’s not anymore
jhdkids Now only to benefit the kids no research just the kids
My First Video Youtube
My Vlog Youtube
My Website Link
My Mom’s Youtube Which Actually Has A Lot Of Updated
Mom’s Website, a working progress still
HD Family (can only join if connection to hd)
JHD Family (only can join with jhd connection)
Potential Treatments and Cures
Events, Blogs, Journals, HD community stuff
Ribbons For HD and JHD
No Serious Allowed to relax from everything serious
I’m now 25.