Virginia changes so much already due to jhd, that even she knows. She has watched videos of herself from several years ago, and cries!! She cries cause she sees how different she is and what this dang disease has stole from her in looks, and even character !! Now she has to go through this, yet another challenge , it’s not fair!!! I’m mad as heck, not only is gin going through this, she has sisters and a brother who watch everyday !!
Almost every night I hear from Aidan “I wish I didn’t have JHD” when he is itchy, restless, & can’t get comfortable. Or when he falls. Tonight he looked at Sis, while they were eating dinner, and asked “Sis, do you wish I didn’t have JHD?” Of course her answer was “Of course, buddy, I wish you didn’t.” Then he asked about everyone in the family, name-by-name. I let him know that there was an “army” of family and friends that wish he didn’t have JHD. Wow, I hate this f-ing disease…. Aidan: “I hate JHD. When is it going away?” (with tears coming down his face) Me: speechless, hugged him, wiped his tears and said “When we find the right medicine…” I wish I knew when that would be.
“I hate JHD.”
“I’m tired of falling.”
“I wish I wasn’t itchy.”
“I wish JHD would go away.”
When we took Wyatt for his evaluation while waiting in the ER to be admitted he asked ” do they have a cure yet”…he’s also said he was itchy and cant sleep.
She is braver then brave… And since we have been,fighting all of this she has cried… And said she is scared. That is the 1ST TIME SHE HAS EVER SAID SHE WAS SCARED.
And that breaks me,even more.
” DON’T WORRY ABOUT ME & DON’T CRY FOR ME ” ” I’M OK MOM ” AMAZING ANGEL SHE LOVED THAT GIVING HER “STEM CELLS” WAS HELPING TO FIND THE CURE ! Emily‘s STEM CELLS ARE STILL WORKING FOR A CURE 5 YEARS
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-’
From a parent who lost a child (children)
Jennifer (Olivia 12)- I think JHD is the most cruel, ugliest form of HD, really any disease. Any person with this form is immediately one of my heros. A person with JHD is always positive regardless of what the are going through.
Yumi (Kochan 16)- I hate HD, but HD gene is one of the cells of my son. So he would not be born if he had lacked HD cell. I can’t imagine life without him. All I want is him. Therefore I need him and love him with JHD so much.
Karen (Lucas 21 and Linda 36 passed away and Chris 18 is still alive) JHD Is the most awful Disease out there It is So Heartbreaking And takes our Children from us, Many times even before they pass ..Children with this terrible Disease Are the Bravest Kids I’ve ever seen ..They Are my Heros ..With the Biggest Hearts and the Best Smiles ..We Will always Be Praying the Cure is Near ..For Our Kids
Stacey (Cory 21)- well…..it’s sad that since the discovery of the gene, that our countries high divorce rate, that blood tests that used to be required for marriage checked for venereal disease and not genetic disease it’s also sad that these kids have to miss out on so many things-driving a car, dating, friendships BUT, I do believe they (JHDers) are angels here on earth, and each have a purpose to fulfill in their short lives
Kinser (Meaghan 15) Meaghan was diagnosed with JHD at the age of 10. She lived a fairly normal life until age 14. We got her a service dog when she was 12. Dixie was her best friend. The best thing we could’ve ever done for Meg. Right before she turned 15, she fell down our stairs and that is when all of her neurological problems went into full gear. By the summer of 2015, she was struggling terribly. She couldn’t walk without holding onto things. She was itchy a lot of the time, didn’t sleep, choked occasionally and was starting to have problems keeping weight on. In July, I admitted her to the hospital because she had skin ulcers, uncontrollable itching and was not sleeping more than 1-2 hours at a time at night. It was the worst thing. She ended up in the hospital from the end of July until she passed in November, due to going into cardiac arrest. Totally unexpected. The whole 4 months was a nightmare of fighting, politics and doctors not knowing how to help my poor baby. The direct care she received from the nurses was phenomenal. Other than that, I could’ve killed everyone. This disease is a horrible, terrible, cruel way to live, for anyone, but, especially for our children.
From a parent with a jhd child (children)
Patty (Bryan)- I am a wife and mother of two children. Bryan is my son and Angela is my daughter. My husband and I met in high school in 1985. We married in 1986 and I followed him as he pursued his Navy Career. In 2001 my husband was diagnosed with Huntington’s Disease. He retired and was medically boarded out of the Navy in 2003, we then moved back to our home state of NM. Because of the progression, Ed was placed into a nursing home in 2008. In 2009 my son was arrested, after being released from jail, he moved back in with me. I could sense something was terribly wrong, in fact I had those feelings since his early teens. We went to see his primary care physician and he referred him to the Neurology clinic at The University of New Mexico Hospital. After meeting with many doctors, Bryan was given the genetic test for Huntington’s Disease. A couple weeks later, we were called back for the results, POSITIVE for Juvenile HD was what we heard. I somewhat felt at ease, I think because deep down in my heart I already knew what the answer was going to be. 5-7 years is what I was told, how does any mother absorb that sort of news? I knew at that time that I had the responsibility of caring for my son for as long as I could. Watching him progress the past 4 years has been the toughest, seeing the daily changes with his body and mind have been very difficult. Yes, it’s hard when it’s your spouse but when it’s your child there’s just something different about that. the past few month’s have been hard on him, his gait and speech have declined substantially. This past March my daughter was tested as well and thank the good Lord her test was negative. Disease is never fair, even less fair to me when it’s a child. What do I think of JHD, I think it’s an ugly monster. We have to remain hopeful that some day there will be a cure.
Jessica (Cailey)- I think it’s horrible I think the disease is the most horrible thing I’ve ever witnessed.
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!
Siblings Of A Loved One With jhd
There was a night after Kate was diagnosed that her “little” brother Mikey came to me with tears running and his voice was tiny as he asked…
Mom why… She and me,were supposed to sit and watch our grandchildren play ..we were supposed to put you and dad in a nursing home that wouldn’t change your diapers (it was a long running joke) … Mom she is suppose to be with me…She is my big sister… Why mom why does she have to have JHD. Why??
I need her …
I had no answers for him then… And I still have no answers for him or her 3 other little brothers…
Landon who was so brave and strong for her… Who was so sure he would find a cure/treatment… And now stuggles with his fears and anger with losing her, he asks for his family back.. The family we had when Kate was 18 when he stayed the night with her And they would laugh and watch movies.
Shawn who even with his stuggles he is the frist one to,always help her, he understands her slured speak and never tell her no, he makes her drinks or helps her to eat…
And,Gabe who tries to help her eat..
I don’t have answers for them… But we tell them that we are togather and we love each other. That we are stronger as family then we are alone.
This song reminded me of these moments.. The moments that “The Boys” and Kate will not experience..
I know Mikey will tell his children about his big sister and who she was, the laughter and trouble they got into.
I know Landon will hold,in his heart the times he spent with his “Sissy” at the apartment before she,had to move back home. He will find peace in sharing and laughing about those times
I know Shawn will become stronger and braver, and more compassionate Becasue of his actions with his sister.
Gabe will find self-confidence to grow and develop Becasue he can help an adult.
For me I find that my heart breaks when I think of the Boys .. They all have different relationships with thier one And only sister. They are braver then me…
Dave- What I think of it isn’t fit to print
Wendi- Beyond Horrible and Unfair
Lauren (hd +)- I think it’s the worst disease I’ve ever seen, much worse than the adult onset. And yet, such severe symptoms don’t break these young adults. They show such strength through such a horrific disease.
Jonathan (son at risk)- If you want a cold response…. It is the gateway to cure all neurological diseases. That is because 60% of children have an earlier onset that expected by CAG repeat meaning that they can be studied to identifying the pathways that enable HD to be so destructive. Every rare neurological disease that is getting a gene therapy “forever fix” is because of the parents who love their kids. HD goes nowhere in comparison. So in short, the deep suffering of our JHD kids and families is absolutely horrible, but the potential to show the way to cure all neurological diseases should be the driving force behind the research and the knowledge they bring out should be immediately applied to helping the children first. THe game of ineffective research will only stop when JHD kids are taken seriously. Their cry of suffering is the deepest need and is being heard at the highest levels of Heaven. God will open the doors and make this a better world because of the suffering of our JHD children. They all deserve the greatest love and appreciation from everyone involved with neurological diseases from Huntington’s to Parkinson’s to Alzheimers.