My name is Jacey Mukka. Currently i’m 22, when i wrote this, i’m now 25. I live with my mom (Jane) and my older sister. My oldest sister has a baby I’m an aunt but she doesn’t live with us.
My littlest sister’s name is Karli. She was happy and loved to laugh. She loved helping people, making people feel better, being a princess, loving life, and just loving everyone around her. She had a glow that made the entire world light up with her love and compassion and innocence.
My daddy(Karl) loved us a lot. He loved being a Dad. He loved to get candy, all sorts of it, and a ton of soda. He also loved having big dinners and getting everyone he could to eat as much as they could.
In 2010, my father and little sister passed away from Huntington’s Disease, 2 months apart. Princess Karli Belle, as she loved to be called, was diagnosed with Juvenile Huntington’s Disease after a long series of tests and years of watching her and trying to figure out what it was. My dad was diagnosed with my little sister because it’s genetic. Daddy was 48 years old, Karli was 13 years old.
Huntington’s Disease in adults goes until midlife and then starts your symptoms changing behavior, mood, the way you walk, talk, think, move. Huntington’s Disease in children can start earlier then even being a toddler with symptoms. It causes changes in how you walk, talk, eat, think, behavior, basically everything in adults, but they get stiffer than adults (dystonia). They also have more pain, seizure disorders, movement attacks, and anything else you can think of that can cause a life of cruelty from the disease. It’s called Juvenile Huntington’s Disease
My hips are disaligned i’m having seizures all the time i’m in pain all the time, i’m in a housedress, and there’s a even bigger list in a link at the bottom of this story called symptoms.
It’s a terminal disease and in adults (HD) you pass away 20 plus years. In children it’s usually 15 years or less, as i’ve found.
Finding it’s genetic means that me and my siblings were at risk, my older sister has a different father though so she wasn’t at risk. My older sister Erica, my little sister Karli, and then me. My mom took care of all of us.
Karli was very little with a very high repeat of 99. She got very sick very fast. They taped her, and she went to mri’s, doctors appointments, she was in the hospital so much that at a very very small age she was telling me and Erica how to be brave for ‘pokes’. They always said that Huntington’s was only in boys. When Karli was diagnosed it was a huge shock. Mom took me in the bedroom and told me, my little sister is dying, what do i do. I thought I was fine, until I got into the hallway and seen the princess standing there. I broke, started sobbing. Karli asked why I was crying. Mom told her it was because I was afraid I was going to get shot. Karli burst into tears too.
We went to Karli’s Make-A-Wish in Florida, where mom said she could really see it in me, we went to Give Kids The World Village and seen Shamu, Karli’s Favorite!! Daddy was too hard to handle to come, so we took aunt Natalie.
I started showing symptoms around 10-11 years old. I was diagnosed a day after my 13th birthday. We got a phone call, my mom asked them to wait until after my birthday. I’d already been clinically diagnosed, we already 100% knew this test was coming back positive. I had an mri with Karli for a sibling study and my brain showed I had jhd, I already had symptoms!! I was ready, I just needed a confirmed result to get on with my Make-A-Wish and therapies and everything else this disease requires early on.
Mom told me the results, positive, it didn’t hit me right away. I was sitting on the stairs and it finally hit me, i’m sick. I started crying so hard. My dad was very out of it and mean a lot. So mom started yelling at him, Karl, look at your daughter she’s upset!! I can’t remember much, but I remember those moments.
They tested Erica because she was diagnosed with dystonia and was impulsive and wreckless, we all thought there can’t be another with this. No way that’s possible. That’s just too many in one family. Erica tested positive. She’s 2 years older then me.
A father with Huntington’s Disease, A mother, 4 children, 3 symptomatic with Juvenile Huntington’s Disease. Everyone would assume that since my CAG is the same as my father’s that I wouldn’t be sick with jhd. CAG’s have been proven wrong over and over again. I don’t know how I have jhd with a low CAG but that’s not my issue. Mine is that I just do, and it sucks.
Every even I went to of Karli’s I could barely get through. Her concerts, graduations. I missed one once to play my favorite game in gym. I felt so guilty.
I fell into a deep depression. I started hurting myself. I hid it really well. After awhile though, stopping, relapsing, stopping, and relapsing. I gave my mom my stash of razorblades. She was in shock. I felt so bad for her. We made a deal that if I didn’t do it anymore I could live at home still. Every once and a blue moon, year and a half to two years maybe I relapse by hurting myself slightly once. I stop and get back to the picture and keep moving. I have no choice.
Even though I couldn’t see it, God and Jesus were there the whole time, hurting with me, never letting me alone. I was always loved and cherished by them, but couldn’t see it. They picked me up when I fell and I just didn’t want to believe it.
When I was little I had 3 angels. We talked and they were there for me. I’m in my teens now, there’s no way they still care about me. There’s so many people in this world they don’t want me. That’s not true.
When I was diagnosed, I was going to wish for a puppy. Mom decided with help, that I shouldn’t use my one wish on something that I could already get. We went and visited my grandma from my mom’s side. She said of someone who might have puppies. It was the perfect timing. I went and visited the puppies every time I could. Counting down the time until I could take one home.
When it was time to pick one out, I didn’t pick him, he picked me. He just jumped on my lap and sat down. I took pictures of him growing up. He was the one with the most white on his chest. I puppy proofed my room, made sure all the cords were hidden, everything was ready for him. Toys bowls for food EVERYTHING. He even had a blanket in with his mom so he could have her sent when he came home. It was the day.
We went and got him and brought him home. I kennel trained him. It took a lot of patience. Daddy was completely against it, no dogs only rabbits. I said daddy, but look how good he is. He pottied right there in that moment. Since the disease is genetic, and it progresses so fast and easy, that I couldn’t have children.
I named him Sabrael, it’s the only angel that can ward off the demon of disease. That is truly what he is too, he’s my baby. They were so sweet to us, letting us take pictures of him growing up and letting us put the blanket in with him, when the time came she said we could have him, no money or anything. He’s my best friend and my baby all in one. He’s sweet and adorable, but loves to potty on anything. He’s a Yorkie/Chihuahua. I always called him my little frog prince. That was even the theme of his blanket.
We already had a dog named Sully, he was rescued. We have no idea what kind of dog he was. He was strong, adorable, smart, and fast. No one could catch him until his old age. We couldn’t even walk him unless he wanted to be walked. He pulled too strongly, even for the grown adults who tried to walk him. Karli named him Sully after the monster on Monsters Inc. Sully was Karli’s baby. He layed with her and told us when something was wrong with her. Daddy didn’t like Sully either, but secretly we’ve seen him pet him, so I think somewhere in there he loved Sully and Sabrael.
Sully died just a little while ago. He had a huge tumor on his side. He made it past Karli and Daddy though!! He took care of us for as long as he could.
My new hopes for a Make-A-Wish was a full live aid concert for the money to be split between Make-A-Wish and Juvenile Huntington’s Disease. They said it was too much, so I went on an electronic shopping spree. I took it upon myself to go online make a wish list of electronics i wanted and sent it to them. They fixed the list I made for me lol made it was better threw in extras and mailed it to me. They even made the video editing program better.
Someone from Orange County, California had told someone it’s okay if they have a child because the child couldn’t have it until it was older, and by then there would be a cure. There was a spark that came alive in me, the same spark i have in the love of helping these children. That is when I decided I was going to make The Real HD. In adults AND children. Karli and Daddy became movie stars.
We had a lot of rabbits, that had rabbits, that had rabbits. I’m allergic to rabbits. They lived outside, but in a Yooper Winter, which was most the year. Erica, Mom, and I took turns caring for them. We even had ducks at one point. I thought I was doing everything right. Mom came along and fixed what I did once we started losing rabbits because of it. We had these beautiful velveteen rabbits, I think there were like 3, some were babies.. They died and I don’t know how or why, Mom says it’s because I thought I was doing it all right, but I really wasn’t, and it was winter, crucial to get it all right. I’m sorry beautiful rabbits.
My dad was highly aggressive and no one believed it was the disease like we knew it was. He drank also, but they always thought it was something like a family matter. I kept my stuff in boxes in my closet so I could leave, I wanted to move. It was too dangerous for our family and friends for us to leave, he was really scary. We had safe rooms, locks on the doors, emergency lights headed towards our neighbor who would call the police if we turned it on. He kept the phone unplugged, and back then we didn’t have cell phones like we do now. He always unplugged it, because Mom was always talking to her ‘boyfriend’. Everyone was her boyfriend. She didn’t even have a boyfriend, she had a husband, and that was my father.
Once my dad was finally placed in a nursing home, Sully took over his chair. He acted like he was my mom’s husband. He had such a personality. When Erica was diagnosed she got Roxi, from the humane society, tiny shaking little princess she is. She loves to be called a Princess.
We went down the road from our house, Erica and I were on a mission. There were puppies we passed and when we seen them and the lady told us to take one, Erica chose and we took. A little baby bear, Karli named her Bella. She was a really big baby, took up all your arms when you wrapped her up. Roxi and Bella, Erica’s Two Babies. Roxi has a pet lizard. Her first one, Lazareth died, so they got a new one named Razberry because Roxi could NOT handle living without a lizard. She loves them a lot. You only have to say their name. Roxi where’s Raz?! Off she goes speeding towards, getting to the lizard’s tank and shaking her little fur coat off.
When Erica was getting ready to leave the house, and mom would be Roxi-less. She picked out a type of puppy and we all pitched together to get mom Ellie. A miniature pinscher. An adorable red little girl, who loved to cuddle, and mom absolutely adored her. Her own puppy she could dress up and love on. Ellie never seems to complain about it. She even gets carried around in mom’s sweatshirt. Ellie had 2 litters of puppies. The first litter was pure min pin puppies, adorable. We never kept one though. A year ago she had a second litter, we kept 2. They’re part min pin, chihuahua, poodle.
Bentley, he needed a tough name Erica said, so she named him after a car. And Dottie, has so many dot’s on her, even one on the tip of her nose like Karli had. I was laying in my room when we were deciding whether to keep Dottie or not, I took her and cried in my bed and said mom please can I keep her for just me. I’m so attached to her, i’ve raised her up as my own service dog. Sabrael and Dottie have a love hate relationship but they are both extremely loved I love them both so much. We call Ellie Dottie and Bentley the ‘three musketeers’.
I also have 4 fish.. A beta in the kitchen and the 3 musketeers and their new friend hoover, in my room , who cleaned up their tank from another algae attack.
According to the chart, i’m in the end stages. I could die any day. Anytime. I don’t know when, that’s up to God. I do know that I have an amazing family and life that i’ll miss, but i’ll see them again soon. Until then I’ve gotta live like i’m about to die. My favorite quote is be the change you wish to see in the world by Gandhi
God gave me the gift to write on the computer. I’m still on the computer and that’s thanks to him. I don’t know how my arms aren’t broken and hands aren’t dead from writing this, they just aren’t. I believe that what you’re meant to do in God’s purpose he’ll give you the ability to do it. Hold on to God and Jesus words and promises..
Numbers 23:19 – God [is] not a man, that he should lie; neither the son of man, that he should repent: hath he said, and shall he not do [it]? or hath he spoken, and shall he not make it good?
Like making the jhdkids website in honor of Karli and the amazing people and kids who shared their stories. jhdkids.com
5 thoughts on “My Story”
You are an amazing young lady Jacey. Having a nephew who has been diagnosed with JHD (at age 6, he’s 8.5 now), I know what that diagnosis can do to a family. But your spirit and your positivity is contagious. I am in awe of U. Hugs all the way from Canada!!!
I read your entire story…you are a very good writer….your family has had a very tough time…actually my name is Ruth Irving..I live in wisconsin and i am your second cousin…your grandma is my aunt…..My parents were Ruth and Roy Mukka…..my dad and your grandpa were brothers….I remember your mom and all of your uncles and aunt jacqueline….I wish you and your family the best…keep writing you are very good at it..
Thank you for sharing! You are an inspiration to so many and very few are, whatever happens don’t forget that!
Newly diagnosed with Hd. I am speechless and noting your blog to read later. Truly speechless…….
I was just diagnosed and I’m almost 32. I thought it was part of getting older to randomly twitch and space out/forget what I am doing until I had a conscious seizure at work about 6 months ago. My blood pressure skyrocketed and also had a stroke. I was adopted so I had no idea that I had this. Before this my wife and I were trying to have kids and now it kills me to see her so stressed and having her support me like this. You are an inspiration to me as I’ve been reading your blog/vlog. I have been filled with emotions lately and don’t know to react to them but cry and have been very depressed.
Fort Worth, TX