Princess Karli Belle, Erica, and Jacey

Karli Jayne Mukka 13 yrs old Erica Corene Mukka 26 years old Jacey Lyn Mukka 24 years old

Karli September 12,1996-February 16, 2010

Erica August 5, 1990 Jacey October 22, 1992

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Princess Karli Belle went to Jesus now and her Daddy followed 2 months later from adult HD. I think he had a broken heart

Her all time favorite song- Amazing Grace- always she loved that song and she seen Angels in her room. She lit up a room with her joy, or better put by her.. Faith, Hope, and Love. She couldn’t wait to go sit on Jesus lap. She seen Grandpa and other family members and wrote them notes and drawings. She loved presents, cupcakes, we always loved to sneak her chocolate, she only liked when her sister Karisa read to her, she was a princess, she was famous and she knew it, and she’s very loved. She had a bunny named Bell and later on she named our dog Bella. She loved Princess Belle, that was her favorite. She loved ‘puppy’ stitch so much in Florida she didn’t want to leave him she just kept hugging him. She loved everyone she met and greeted them with a smile, hug, and light. Her puppy Sully is Black and White and named after the big monster in monsters inc. She sang him to sleep and as he grew bigger than her he protected her, and cried when she was having another seizure. She got a puppy named Ellie, a min pin, and the puppy knew how to cheer her up, tuck her in, and than sleep by her.

Karli loved  Being A Princess Angels Jesus God Heaven Beads Boat Rides Polly Pockets My Little Ponies My Littlest Petshops Cupcakes Sneaking Candy Lik and Dips Grape Everything In Purple Give Kids The World Village and Animals

Even when she went to the E.R. during the night, Sully stayed up and cried and Milwaukee hospital trips he wouldn’t go outside or eat. Even I celebrated when she came through that door again, even after an hour. She’s so much of my world. She lived a life of pain, but didn’t let it get her down, she couldn’t do everything like the other kids, but she didn’t care she did it all anyways. She went through tests most her life to try to figure out what she had. ‘Only boys get hd’. Eventually she was diagnosed. Mom put me in her room and told me, and I couldn’t stop crying. We went in the hall and Karli saw me crying. She asked what was wrong? Mom said I was afraid of getting shot, she started crying too!! It’s so hard going through jhd without her. She kept fooling the doctors they kept saying its this time say goodbye they said that alot, the doctor even carried her to the vehicle once and our pastor prayed over her, i guess the prayer worked that time.

When she left us it was so sudden it looked just like any other day, until her lips turned blue. That’s the day so much of me died. Sitting on the foot of my Daddy’s bed 2 months later, he told us he seen Karli. He went with Karli. Daddy didn’t pray, but before we came and watched him go, he prayed.

Karli was only 13. She was ready to go get the cure that never came. There was never hope like the Initiative. This was never here. Nothing existed for kids with JHD. Everything’s for adults. Did you ever check the age limit?

I would never wish grieving even on my worst enemy. You just always remember and hold on to what she says ‘always keep jesus in your heart’

I love you Princess Karli Belle and Daddy forever

-Jacey-

The Mukka Family. Here’s our story…our grandma June had HD she passed away when we were really little, many years ago. One day as we pull up the driveway there was an ambulance and some police cars near the shop.  My mom told us that uncle Frankie died.  He shot himself; he had HD and was not a very happy man. Then Karli came along and started having a hard time doing a lot of normal kid things.  It took two years of

going to drs before we even knew what JHD was. When we found out that Karli could have this, it meant daddy could be sick to. Later they both tested positive. Karli became the poster child of HD awareness. Her add was in all kinds of magazines such as Time, News week, this old house and 30 others! She was famous to she told Billy Aaron Brown big Hollywood actor. A few years later Jacey became symptomatic and decided to test. She to tested positive for JHD. Then 2 years later I tested and next thing you know the drs were saying she is positive to. Jacey and I attended a national convention for HD and found out

that research was geared mainly for adults with HD,and because reasons we didnt understand,it excluded most of the Juvenile popullation of this disease.  That inspired us to make a change and get people involved to help raise money so that drs and researchers could start a fund to help find help and understanding  for the kids. After all children are the future generation. Unfortunately Karli and my dad Karl just passed away. Karli fought through many seizures, nurses, hospital visits and kicked many boys with stinky finger.  She passed away on Feb 16, 2010.  My dad Karl passed away on April 29, 2010 peacefully in his bed at the nursing home. They are now in heaven together, looking down on all their friends and family. Doing what they do best, playing tricks on us.

Through all the bad there has been some good make-a-wish granted us all wishes.  We have the best caregivers, my mom Jane who was always there by Karli’s side day or night (she will continue to do the same with Jacey and Myself) and our sister Karisa who is not at risk but of course would do anything possible to help us when we need it.  They ARE the strongest of us all, because they have to survive it all. I’m never going to forget the day my mom told us that we weren’t an unlucky family; we just won the genetic lottery. I think what helps us get through it all is we try to end each day in a smile, make good out weigh the bad, and constantly remind one another that we are here for each other.


My JHD Vlog Updates

Mom’s Channel

Jacey’s Website

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josh and karli (3)She use to always give people hugs and kisses everytime she saw them and

I remember pushing her around in her wheel chair

-Her Cousin Josh

trevor and karliShe was a beautiful individual, funny and loving. I remember when Karli and I would play games outside together.

-Her Cousin Trevor

As for thoughts about Karli… I can remember meeting her

Karli at convention with Mindy and Nancy Wexler
Karli at convention with Mindy and Nancy Wexler

at the 2004 convention.( my first convention) I never knew children could get HD and Karli changed my life. A few years later in 2006 I was at the Wisconsin convention and I got to see Karli again. Once again she touched my heart, soul and mind.

Karli was the princess of HD for many years leaving footprints on the hearts of all she encountered.

-Mindy A Friend

Upper Michigan- Jacey (2)

This is my bucket list I’m Jacey..

  • Help Kids With JHD
  • Get Their Bucket Lists FulFilled
  • Keep The Initiative Going Even After I Die
  • Keep Their Memories Alive
  • Let Others See They’re Just Kids!
  • Spend As Much Time With My Whole Family As Possible
  • Stay Out Of The Hospital
  • Finish The Memory Stuff I’m Leaving Them
  • Find The Perfect Balance With Jesus God And Life And The Bible
  • Don’t Wear My Mom Out Before It’s Erica’s  Turn
  • Stay Online Able For As Long As Possible So Focus On My Hands
  • Remember As Much As I Can About My Family All Of It Including Karli And Daddy
  • Play With My Puppy Always
  • Find A Hidden Waterfall, Hidden As In Not Planned!!
  • Make My Funeral Plans

I’m the one in the purple dress and yellowish strip behind my Daddy. My little sister Princess Karli Belle is in the stroller with oxegyn and a feeding tube. My Mom is between my two older sisters Erica and Karisa. Erica is on the right in a wedding dress. I’m sick and so is my sister Erica. Princess Karli Belle died and my Daddy died a few months later. I never thought I’d go from me to sick so fast, and from feeling good to so sick. I lost alot of abilities to do my bucket list, I wasted time. I’m from Michigan. It hurts when you cant do what you wish you could so.. Please help these kids before they can’t do it either!! Please Please Please Please!!!!!

If you need to reach me my email is jacecat_99@hotmail.com

Moms Email Is jym092000@yahoo.com

Erica And Karli

Erica Holding Karli

Erica’s bucket list

  • Go To Paris

She is a very live life to the fullest person! It’s her ultimate dream.

Her Email Is ecmukka_55@yahoo.com

karli (173)

Karli’s dream was to grow up and become a teacher. She wanted to live on a farm with her dog Sully. She was going to make a great mother. She was ready to go get the cure s he said so she was waiting to go. It ended up being too late she passed away at the age of 13, no cure. Still no cure or treatment.

Karli

Erica

karli.jpg

Jacey

Jacey Erica and Karli

2 comments on “Princess Karli Belle, Erica, and Jacey
  1. Nicholle Grant says:

    First time I seen this complete story/ had me in tears yet smiling at the bond you share/the closeness/the strength/the love and the positive attitude you have toward life ❤

  2. This a family of enormous kindred Support,I did a biology term paper on Huntingtons Disease,for my biology 101 class,and the disease is horrendous,it destroys a good majoriity of whole families,by relentlessly affecting each generation unfortunate enough to possess
    the mutated form of the huntingtons gene that when healthy helps in manufacturering
    normal growth factor.
    So many new generations are automatically destroyed,children starting out dont
    get the chance to grow up and accomplish their dreams of college,jobs and marriage.
    In our Jewish culture,we know that the pharoah planned to create a plague upon
    The thousands of jews in Palestine,so at Passover ,we pray that a black plague should
    reign upon our murderers.
    The first words we speak at Passover is Locusts ect death of the first born,
    Passover is a celebration of the exodus of the Jews from Palestine thousands of years
    ago,no time to make leavened bread.
    Genocide is a mass destruction of people of a certain ethnic group,so Iam
    totally able to understand the massive horror of an autosomal dominant genetic
    disease,that literally wipes out families that are very unfortunate to firsit inherit and then
    have this disease wipe out generations of potentially wonderfully caring people.
    Even after the Pharoah tried to rub out Jews from all parts of the world,
    The Russian Kabums and the Kosacks tried next,and then Adolph Hitler a
    dangerous man who was disabled himself from dyslexia,depth perception issues
    and he used his nazi father’s ideas and eventually built the gas ovens and deported
    six million Jews and some christians and handicapped people who were of Eastern
    ashkanasik Judism to labor concentration camps where our Jewish culture during
    WorldWar two,was exterminated.
    Two of my grandmother’s brothers were deported to Auschwitz
    my grandfather had the crap beaten out of him,two SS nazi police officers came
    to his home in Germany,and took the cleats on their boots and fracture his skull
    and broke his sternum,
    Family life is supposed to be great,lots of siblings loving and playing
    and their parents watching them discover the wonders of growing and having fun,
    I wish the neurobiologists could silence the mutated huntingtons protein and let
    familieis experience the joys of being together without that black cloud of
    terminal illness hanging over their heads.

    I know my Jewish culture concept experienced death and destruction
    at a very different level,but like those with Huntingtons Disease,we had no
    control over those who destroyed our European descendents in Palestine,
    and Eastern Europe.

    You have my 100% support,and empathy for a life
    sentence,that zipped through the generations.

    Sincerely Your’s
    Mrs Corey L Ross AKA rikvaYehudith@gmail.com

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