Karli and Jacey and Erica Mukka All Sisters
13 year old Angel
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
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 Erica 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 population 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,Erica) 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.
I’m, Jacey, 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 a lot of abilities to do my bucket list, I wasted time. 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!!!!!
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Karli said I wish that could play outside on the slide and swings with my friends without falling. I with that my dotors could help Daddy to not be so angry or Jacey or anyone I don’t like HD it’s no fun cuz I can’t play like my friends at recess. I want to go to the party to celebrate the cure for HD and dance. It will be lots of fun!
‘jhd sucks and it hurts and it surprises you with different things that are cruel all the time and i really hope you help the kids on here for that sake!! Sometimes i’m so scared to die and others I hurt so bad I want to. -Jacey-’
Jane (Karli 13 passed away, Jacey, Erica) I wish that everyone fighting this disease finds love understanding and care that they need for the most quality filled life and quality of care. I wish that our community of support continues to grow. I hope that JHD will gain even more attention to help support our doctors continue to make great strides in research and care alike. I wish for JHD to continue to gain the recognition it has as it offers up hope to our families and we need the time and help. I’d love nothing more than to grow old while watching my children grow with my husband by my side. However, if this isn’t possible I wish that people embrace our families rather than fear this disease. I wish for all the families I’ve gotten to know and those I have yet to meet, strength, peace, love, and a year to celebrate. I wish everybody a year of compassion and answers to their needs . Also that no more families have to say goodbye to a child, parent, brother, or a sister… AND I WISH US ALL TO MEET FOR THE CELEBRATION OF A LIFETIME… THE CURE!
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
She 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
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
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.
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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.
Jaceys JHD Journey