How was I diagnosed at 13 with jhd slowely progressed through where I thought I should die and still hurt like heck 24/7 but my symptoms are so mixed from seizures dystonia to confusion and panic disorder jhd and hd how can i live this long and have both i wish I would’ve just died with Karli, who passed away at 13 years old at home my Dad from hd in a nursing home 3 months after her. This study was made from us, Karli, Me, Erica, and Daddy, Same CAG as Daddy 47 but Karli’s was 99. Yet im 30 something years old confused as heck, went through wheelchair stroller foot braces make a wish, watching my family die, seizures dystonia very badly choking issues spasms digestion issues at home on the couch
I keep having these episodes someone very smart found the name for me dissociation episodes. Very aweful feeling i just wanna stay awake it feels so numb and me and not me atthe ssame time. The crazyparts all of it. Going through urns for my family members, how many cubic inches to fit my little sister. Crazy. My dad has a really cool looking one mom chose because he loved being outside and inthe woods. I even chose ne i want, if mom keeps us in urns. As long as we’re all together. I don’t want to be alone in an urn if my family’s ashes are buried together. This is reality, crazyness of it all. Lets just pray we all make it together in Heaven. Amen. I had a friend for a short time she died recently like days hername was Tiffany, I didn’t talk to her but we liked the Cheshire cat and alice in wonderland and thought the same way we still communicate with her family too. I can’t wait to meet her oneday. I don’t say that often how many people who’ve died ill get to meet. May ittsa coping thing too. Doesn’t really matter when im already dying anyways too right.
There’s so many world i’ve lived in and mourning myself as what i could do heres More moments I miss being able to handle but love seeing I miss just having my bedroom back ridiculous disease i’ve updated a few, people don’t get, heck i don’t get how i’m still alive and suffering juvenile huntington’s disease.. sprained ankles seizures dystonia through my childhood and through a few years more i honestly wish i was dead because of how painful it is but my point is i’m not yet and i reaally need to stickk with God’s Will no matter how many people don’t believe me it doesn’t matter because noone likes everybody, and this is God’s World no matter who says otherwise, i have a little sister who passed away from jhd Princess Karli Belle was only 13, My Dad Karl had HD and passed away 2 months later, I was diagnosed with jhd at 13 years old, and my Older Sister Erica a bit after me with jhd also. My oldest Sister Karisa has a different Father so she’s thank God not sick. Even though everyone’s different with this disease they all deserve to be helped and loved and shown for how amazing they are, be remembered and missed, showing how many kids there really are suffering and everyone deserves it no matter the age the progression type, some have bad chorea, some are completely stiff, it’s all different, even CAGs don’t determine the pathways on it all i’ve been putting together more videos on tiktok for the jhdkids too showing the world they’re here they need their own help and research and understanding if you can’t see the links all the way just click on it
this one below is mine memories i miss so much and some that bring me joy still like my rescued Yorkie Leo, Tigger is more like it he can jump to moms head
Thank you to everyone brave enough to share their stories. To show people that these exist and that they can’t disagree to the proof. Juvenile Huntington’s Disease Exists. That’s why there’s stories and videos and research showing these kids need help because they are kids. They have different brain science and symptoms their own personal hells never the same one as the others. That’s why i did it. When I got my make-a-wish i made The Real HD. To show, it exists, in kids and adults. I got so upset from a post someone had put about information i don’t remember all about but i wanted them to see the truth. To know it’s real. So Thank You For Everyone who posts about it, shows videos about it, talks about it, says JHD exists and so does HD but not the same thing. 2 types of one disease, child onset and adult onset. No CAGs Needed for all of this. They’re scientifically being unproven with stories and facts that i’m not up to date with but my mom is and jhdkids have these facts just being alive and showing it the same way. People need to know about it. JHDKIDS is All For The Kids that we can make it as much as possible. I care about every single one even if they’re not in jhdkids because even though i have a different onset like how i can type but others can’t, sometimes im stuck in a corner on the couch only headphones, oneday i get a good day and mom pulls out the small hairwash thing to clean my hair. I keep losing everything, i’m a soul inside a body that’s killing me painfully and i wish it would just stop hurting. I don’t care about getting any attention than what is needed for these kids and families, they’re not alone even if they have trouble finding that out. I spent my years the way i wanted to by showing people how real this is.. and now i can hand it down to my Mom which is mostly often. I’m very proud of everyone who decides to tell the world this is happening so help, pray, fix it.. because these are my children, or sister, or brother, aunt, nephew, niece, grandson, grandaughters.. jhdkids some of the bravest children you will ever get to know and love having known. Be The Change You Wish To See In The World.
Dear Karli and Daddy, you deserved so much more than you got. I know God’s Plan involved everything that’s happened and is happening and I don’t know whether the pain of losing you guys and Sabrael and Ellie and Sully and Grandma and even my family that’s still alive and healthy that I lost because of this disease. Karli, you were just a baby, our baby. Our Princess Karli Belle and you deserved to live be a teenager grow up healthy not in pain. You should be here it’s not God’s Will but I still feel it. I miss you guys so much. Daddy you should be able to be a Dad even if it’s a terrible one. You gave up living at home to go to a nursing home so we didn’t have to leave because I know you hurt so many but I know you loved us still. You probably still do. I know you enjoyed doing things through the woods and hunting and being a Dad buying balls and wrapping them like footballs and us having no idea what’s in them. You died 3 months after our Princess. I think it’s because you’re heart broke so much. You are so lucky though because every day is painful and you get to be with her. I just want to be there with you all. You’re my Dad and Karli you’re my little sister, a princess always, and you deserve to be so much more than a memory. You deserve to be here with Daddy and all the puppy dogs and everything we lost. I know we only have one family photo, the Christmas one from years ago. I cherish it and every moment we had together. I just really wish it could be fixed. Just cure them before they get too sick then they’d be here healthy not hurt anymore. I don’t have a plan, I’m just trying to hold on to God’s so i don’t have to make one. My older sister Erica is dying now too, i really want to die before her because it breaks my heart watching her get sicker too. I may be in pain constantly everywhere but she doesn’t deserve to be sick either. She should get married and have kids, they could meet their Grandpa and Mom could be herself, a grandmother, a mom, not worried about shit that shouldn’t even exist. Juvenile Huntington’s Disease(JHD) and Adult Huntington’s Disease(AHD shouldn’t exist. It’s just cruel. Just give me my family back.
Once upon a time there was a girl named Jacey. She lived, she got sicker, she is going to die. No, she did much more than that but that’s all she could ever feel, because when she walks into her own bedroom it’s everything she can’t do anymore. The video camera she used to record her family and friends. That aren’t here anymore. The stairs that her wish pup Sabrael God blessed her with for 13 whole amazing years. The same amount of years her sister had before she died at 13, her name was Princess Karli Belle. I think our Dad died from from a broken heart when she died because 2 months later so did he. Discovering a world of devices, places, people. Best friends that died before she did. Friends that didn’t care as much as the ones who passed away, or i guess relate enough. We discovered a world where Juvenile Huntington’s Disease didn’t exist barely anymore. We need to grow it. Show everyone it exists and that children get it and they need their own help it’s not all HD is jhd and ahd, no It’s Juvenile and Adult HD. It’s hard to want to know change, and get them to see it, as many have tried. jhdkids and kids with jhd are important to show they exist, not less than adults, but the adults are already impounded as HD. Not the point.. she promised until she died she would help these kids.
Somewhere in between school issues, surviving watching your little sister die while she’s singing in the school concerts, to being sick with Ellie’s puppies 2 of them Bentley and Dottie, my service dog. Surprise their mom Ellie died too. Somewhere along the way of change, loosing progressing. Soda, ice cream, smoothies, milkshakes, juice boxes, water.. water and gatorade half and half because gatorade has so much acid in it. Listening to the stuff she set up, working on project, sleeping in the same corner of the room dystonic, same spot every night. Blocking out everything with her many activities, games with family turns into another can’t do. She had so much life she set up even when some failed she set up others. When you fall to the bottom and the highest you can reach is a little less pain and back down to aweful again, laying on a sofa the hardest corner by the coldest window, by the bathroom and hard floor.. getting sick even looking at her computer she used all the time and try movies, she can’t watch, don’t pity me. So many just don’t understand. Not even her own family can understand. She can’t even see most her family, not even her nieces. Lights, noise, dizzyness, vomit, stuck in the bathroom, stuck on the floor in the darkest corner, somewhere in all of this life, she died, before she even really did, which is not yet. She’s praying it’s in God’s Time he’s meant for me. Her Mom promised her she could die at home like her little sister did when it’s time. Often she daydreams about just not waiting, about how much she’s already lived and is ready for the pain to just stop, about how many times in her life she’s had moments like this. About how she doesn’t even know if there will be anything higher than this because if anything we all know this jhd progresses and tears you apart, and you never know if you can get up again because it controls her. Maybe tomorrow the disease will let her get much better or she will finally be relieved of the pain, but saddened at what she will never be able to be again. She will never be in this world as Jacey Mukka again.
i have more seizures lately its so harddd to be on certtainn devices too my eyes make me sicker nauseaer i get the paralysis things like being only abble to use part of my body aaaafter a seizure, its soo weird. Ive been rememberring things like how you were treated with your parent in the the room with you vs nnot in therapies etc be there for them please otherwise its harder, when i was in middle schoolish maybe i remember waaking up after hitting my head on a school desk by the other kids and turned blue appaarenttly unconcious, were supposed to call an aammmbulance but the school nurse just saaaid i passed out, i couldnt remember anything i just exissted like i couldnt appareently i wore glasses because a student put them on me i didnt know at the time, theey tried waalking me right to a room and i was spinning runnning in waalls blurry unabble to do anything they guided me i guess i ended upp someewhere, they were worried when i had my legs shaking under desks worring about seizures along while later in special ed but they never cal ledd anything for me during the important things, and needed more things she gave me chocolate milk to drink, me n mom went to the hospital afterwards for cchecking these seizures apparently dont matter mucch because people at home just waalk away i fall they cant help me get up they cannt do anything for me so ignoraance bbecomes bliss a lot my sissssterrr erica extra lately she always says keep me out of it during any argument or questions and gets so easily frusterated about anytthing the onnnly reaal thing i can really do is post jhdkids things and make braceletts a miracle i can aat the moment i wanted to sell them and usee money for like the speciallll projects for jhd like facctor h think thats the letter thereshttps://factor-h.org/
so many who need help everywhere but i onnly sold one so far, but ii doo it anyways, annd help when i cann aand often caant help everything around me is so hard to handle noises and even activitties and i cant be with my neiices etc i wish i could but this is aa devvil diseaasee and it doesnt want me to be abble tooo Juvenile Huntington’s Disease is the name and killing and making suffering is its game so many issues so much i cant wriiite and if they write sudo on your chart your scarred becaause they think saline works whennn it is during movements so they think its better then gets worse so be careful aand safe as possible comfortable as possiible and live while you still have ttime before you get so sick you dont want to live at all
I wish for just one second they could feel what i am so they can understand more and maybe they could help more thenI wish for just one second they could feel what i am so they can understand more and maybe they could help more then
I do know. I have theries, do what you usually would but be sure to make more room for making it better even if it’s just a little thing depending especially on how you can like petting my puppies more, leaving my room to see my nieces for even 10 minutes. I’m scared to due, but also so ready.. i guess it’s when you can’t enjoy things anymore it’s all God’s Will. I’m scared and sad about what everyone will suffer when i die.. even when i picture it i mourn myself it’s aweful it’s deep down in your soul deep pain like nothing you thought it could be. No preparing for the pain. I can’t believe I’m almost 30 but still have Juvenile Huntington’s Disease, it’s time of painall the time progressing cruelly and more painful and soo worse. I know my family thinks they’re not good enough but they’re amazing I love them all im so blessed no matter what happens that doesn’t change. My poor Nieces shouldn’t have to deal with this. The unknown is scary, but Trust in God or you’ll go insane. I’m always just waiting to die. What will it be like, from what.. how long.. a ticking clock I’m so good online but seizures movements stuck positions can’t move, other days i have energy, i feel so guilty not being able to handle outside my routine anymore.. ignoring people and they feel neglected and makes them upset about themselves. If anything the suffering we document will help in the future I pray Lord please make it so kids with this version of hd get at least comforting meds something to help them. I feel guilty and confused about how I’m so mucholder and still suffered everything through the extra years, part of me thinks it’s absolutely cruel and i wish i died early.. but also blessed to see memories I wouldn’t have , guilty all these kids have jhd too and die young.. i wonder what if Karli lived now and i died at 13. It’s not fair. It’s your own personal hell. Theres a saying you only live once but you live every day you only die once.. and be the change you wish in the world. I promised that I’d help the jhdkids as long as I’m able. Don’t be roo hard and n people who don’t understand because they’re still not to that part or their journey.
Jaceys JHD Journey~ My Story 