Important Insight From Experienced

Scroll down to content

Needed Questions Answered By People Who Are/Have Gone Through It

I would want them to know that jhd doesn’t define the child. Make them push their limits. Just because they have jhd they have to continue to fight. It’s not easy finding a neurologist that understands that jhd is different than adult onset. I would have wanted to know that HDSA and hdyo existed, because I didn’t. I’d let them know about especially the convention and the hdyo camp, they should find our network of parents and families on here. I literally had no one who understood what I was going through. Patrick passed away at age 15 from juvenile huntington’s disease. -Gina

Christina (19)

Get in a supportive group. I had no one n it was hell. I had to be my daughter’s everything. Make sure you know how they feel n what all they want in end. Like feeding tubes n how aggressive to be to stay alive when it gets bad. Always pray God does listen. Without God I never could of went through it all. Christina passed away at age 35 from juvenile huntington’s disease.-Mary

analiese (46)

That they should make a child with JHD as happy as possible, try to do the things that the child would love to do, go and see as long as possible. Laugh always, keep positive. Her daughter Analiese has juvenile huntington’s disease. Analiese knows she has JHD she just doesn’t know the outcome, I think that is much healthier. -Kathy

lizvet (24)It is going to be trial and error for a long time. If it doesn’t work don’t try to make it work. Just move on and try something new and think outside the box. Her daughter Lizvet has juvenile huntington’s disease. -Graciela

dylan (107)Play the day by ear. Don’t hold onto expectations because it can change minute to minute. Love them with everything you have and never stop saying I love you to your child. Dylan passed away at age 14 from juvenile huntington’s disease. -Jennifer

macie (60)That it’s different for each individual. Some days are easier than others. Her daughter Macie has juvenile huntington’s disease. -Nancy

caleb (7)I would want them to know that you can’t understand this disease unless you live with it. It doesn’t just affect one thing in your life it affects everything. Her sons Caleb and Wyatt have juvenile huntington’s disease. Having a child with Huntington’s is like having a full body burn with a huge sticky band aid on top. The band aid gets ever so slowly pulled away. Some days you just wish you could pull it off fast but then you realize all you would have left is an awful raw pain so you pray the band aid can come off even slower. Anticipatory grief is the hardest thing I have ever experienced. -Kristy


Its hard to say. To this day I am still devastated because the disease is uncontrollable and unconditional. It doesn’t care who you are what you have or what you don’t its ugly and makes people ugly and hateful. It is something that stays in your life even after the loved one has been disabled and destroyed from it. It lingers even after your loved one if finally free and gone. It sucks! I hate it! RayLynn passed away at age 16 from juvenile huntington’s disease. -Jennie

kate (5)I have juvenile huntington’s disease, I hate it it’s bad. Hope for cure. Miss Dad and hate the pain of having it. -Katie

kate (28)A couple times when I was at church this year they sang the song “Lean On Me”. It’s not necessarily a Christian song. I found myself sitting there getting a little hurt. Not one of those people up there singing rarely asked me or how Katie was doing. (Who did they think they was suppose to help. Just them wonderful selves) I have to admit the second time they sang it at church I got up and walked out. I just prayed to God. they probably didn’t mean it, and it was the devil doing what he does best…using people like puppets to do evil. I didn’t quit church because I wasn’t going let him win. I prayed for them. They have no understanding whatsoever that they are being hypocrites. When people are not walking in our shoes they can’t see they are being mean. I go to church for God and I would die if we didn’t have him to lean on. Her daughter Katie has juvenile huntington’s disease. -Rebecca

virginia (191)I have juvenile huntington’s disease. It sucks and it’s hard to live with. You get treated differently because you’re different. -Virginia

jason and sonia (2)Someone should have told me you can’t do it on your own. It would have been easier if I could of got more help sooner rather than when it was too late xx Jason age 36 and Sonia age 42 both passed away from juvenile huntington’s disease. -Sue

kayla rae (4)I have juvenile huntington’s disease. I’d send them the symptoms list. Wish this disease was cured. I wish I could Ride roller coasters again, walk, hike. -Kayla Rae

mia-4I never expected the magnitude of how much our lives would change after HD/JHD. We knew we were going to lose Mia for 5 years… but there is nothing that could have ever prepared me for her not being here. Everything changed. Relationships, the way I think- about everything, the constant fear I have that another one of my children will die- even though they aren’t at risk for HD, the way I live life day to day struggling to make it- wether it looks like I or not. It’s not anything you get over. It’s not anything that goes away. The trauma that comes with watching your child die in front of you slowly is something one cannot describe. For 5 years I tried to give my daughter the best life I could. That’s ALL I did.. that’s all that mattered. In those 5 years I told myself “I want no regrets. I want to be able to say we did everything we could.” While I feel like we did this, the after she’s gone part was never thought about. I couldn’t think about that, because it didn’t seem real that she was going to be gone. Then she was. There is no rule book or instruction book for living your life without your child. I wish I would have known how hard this is. Mia passed away at age 15 from juvenile huntington’s disease. -Linda

erica (5)I have juvenile huntington’s disease. To be patient and compassionate….it’s not only hard to watch it’s hard to go through. -Erica

HNI_0087I have juvenile huntington’s disease. I wish it would go to hell and leave us all alone, because it is literally your own personalized hell that keeps worsening and changing. Give me my family back!! Karli was only 13, 2 months later Daddy died. My older sister got diagnosed with jhd. fyi cag repeats can diagnose someone with hd or jhd, but can be low and still have jhd. I have so much to complain about it I have an entire website of my life -Jacey I wrote this awhile ago both

rachel s (60)I could never have known the pain and suffering my beautiful daughter had to go through. Jhd is so so cruel. And the watch your child go through it is the most painful thing I have ever done. And you can not prepare some one for it. I would not wish it on anyone. What I would say is take it one day at a time. Do lots of things they love make memories and take lots and lots of photos. And on the bad days just be there and love and support them. Rachel’s anniversary is on 7th August 2018 now Can’t believe it will be a year. Miss her so much And the pain is awful. Her daughter Rachel S. at age 17 from juvenile huntington’s disease. -Melanie

morgan-17.jpgI can not stress routine enough. Make the most out of everyday , take pictures and make memories. Her daughter Morgan has juvenile huntington’s disease. -Tamara

erin (1)I don’t know that it is good luck. What one does not have, they have something else. It all just sucks really!! It is not always that easy to do and some days are not good. I always have to go with the flow and be spontaneous. Her daughter Erin has juvenile huntington’s disease. -CM Moore

chloe (153)Daughter Chloe has juvenile huntington’s disease. Her mental age roughly is 6 to do with school work but to do with her fashion she seems to know what clothes she likes well that would be because she has older sister and she keeps her style up to date as sometimes they will dress in same leggings and tops and hairstyles too so it helps too. But all her hygiene needs like showering toileting brushing her teeth I have to do as Chloe can’t physically do. And I assist with feeding her also and also need to supervise if she eating or drinking always as problems of choking often. Even during her sleep she starts choking on her saliva sometimes so I even sleep in same room in beside her as if she needs to turn in bed I have to help her too. Hope this helps. Haven’t tried cbd as its not available in Ireland legally yet. Plus that Chloe is 17 years old. Has a peg also use for meds and feeding too. Although she still takes some soft foods by mouth and fluids too. And Chloe smiles through each day wakes up smiling and goes to sleep smiling very happy out never complains such a strong girl…….keeps me strong too she is my world my JHD warrior princess daughter Chloe be lost without her……just don’t like seeing this JHD take my baby girl bit by bit.My daughter his never questioned her abilities to not been able to do lots of things anymore…….when she was having serious violent meltdowns where I got kicked bitten hair pulled etc…..we decided to tell her she had a little sickness in her head and it wasn’t her fault the way things were happening with her and she accepted that… when my daughter was having serious meltdowns I just said to myself this is JHD not my daughter and when it be over I’d give her a massive hug and say to myself now this my daughter……so I have decided my daughter will never be told cause I fear she would decline a lot as she is a very emotional young lady too….and don’t need to be told her life will end soon… is a very hard decision to come to but unless she asks me something then I’ll answer the best way I can hope this helps. Today we have Palliative care coming to meet both Chloe & myself just feeling so empty about this as it’s explaining all about jhd again and trying to do this without my JHD warrior Queen daughter Chloe knowing her diagnosis is so scary in case anyone slips up as I decided when my baby girl was diagnosed that I would not tell herfor reason being I know it would destroy her as she has never questioned anything and as we told her she had a little sickness inher head and it wasn’t her fault and yes we told her about her scoliosis and Raynaud’s but that was it. Just so heartbroken 😭😭😭-Geraldine

collageI would want to say if you’re new to the JHD community you have to know the onset and progression of the disease is very different than adult onset. It’s more progressive. At a much faster rate. Symptoms are much different. I would say that you have to be prepared to see someone suffer in ways you wouldn’t wish on anyone. I would also express how much strength and perseverance I have seen in the HD community. That there’s tons of support and love..its a community without judgement..many of which can relate deeply. I would say that also there’s nothing someone can say to prepare you for watching someone you love slowly lose their ability and ultimately themselves.. Two of her sisters passed away from juvenile huntington’s disease, Judy age 19 and Carissa age 24. -Kimmy

KochanI want people to know that the progression of JHD is quicker than adult onset HD. And I want researchers to know about JHD and hope government pay a grant for medical research more than they do now. Son Kodai (Kochan) passed away at age 16 from juvenile huntington’s disease. -Yumi

aliyah (63)I know that the secret JHD family group on facebook has been my only support of people that know what to do to help me and what to say. If i hadn’t been digging around online I would have never found it. That’s the only thing that kept me sane when I first found out daughter Aliyah has juvenile huntingtons disease, also if somehow there could be a JHD resources document, it would be helpful. Like of the best websites to get info off of. Like a cheat sheet. Maybe even centers of excellence or a list of great doctors that people go to already that they love. Since we know there can be some shitty ones out there. I haven’t told Aliyah she has jhd but she has found her name on jhdkids.. idk if she knows what it all meant but she knows she has trouble. Doesn’t know about the prognosis. -Jennifer Ann


Firstly that the right or wrong foods play a huge part in our health, including our brain health so firstly I would say their has to be a diet change taking out all wheat, (almond & coconut flours can be used in place of all others), sugar (natural sugars such as local raw honey, grade A maple syrup, dates or figs & other dried fries are fine & can be used in place of sugar) & all shop brought processed foods that have any additives at all. Everything would be organic with plenty of good high fat foods such as butter, cheeses, real fresh cream (grass fed if possible) nuts & avocados, plus probiotics every day in the form of kefir, sauerkraut & freshly made organic bone broth & of course a good amount of fruit & veg. Meat would be natural grass fed organic & nothing processed & fish would be wild. I would remove all toxic household products from beauty to household products…the body doesn’t need to be overloaded with the amount of toxins we are subjected to every single day. It has enough work to do to keep the brain well without having to fight off toxins around the clock as well. Vaccines in all forms would be avoided. If medications was needed I would first look to natural alternatives & homeopathy before seeing a doctor. And I feel most importantly is understanding that we can guide the way we think & feel & in doing so, we can guide how well we are…out belief in God & love are extremely important. I’m not saying we would stop HD but I do believe we can delay it greatly & slow it down…& who knows, maybe generations later, it just might die out. We can but try & hope. Since losing Rikki I have researched natural health & from all I have learned, this is what I would have done differently as I feel this would have helped her so much more than the high calorie foods I fed her that was full of additives, sugar & harmful fats… & most importantly, I would NEVER have allowed her to have been fed those awful shakes the doctor or hospital nutritionist prescribes to them. Those things are full of processed ingredients & fake nutrition that is not helping our jhd’ers. They should be banned. We can make our own nutritional drinks much healthier & full of real goodness that will help. All we need is a juicer & a nutribullit. ☺ xx Rikki passed away at age 27 from juvenile huntington’s disease. -Myrna

megan (88)I wish I would have known that the battle with Doctors, schools, therapists and others for understanding the disease just BEGINS at diagnosis. I wish I had known not to set any expectations of the greater HD community. Despite best efforts our voices for our JHD fall on deaf ears, many think it’s just the same as the adults and that all treatments and research benefits the kids too, they don’t (kids are excluded per FDA rules). I wish I had known how isolated I would feel in the world of terminal illness. There are so many resources and support for ‘treatable’ terminal illnesses like cancer and absolutely nothing for JHD. I wish I would have known how incredibly difficult it is to wake up everyday knowing half of my family is dying right in front of my eyes, at the same time I watch the decline of my child, I know everyday I’m one step closer to being a widow. I wish I would have known how to prepare awesome ‘one-liners’ to the general public who tell me to ‘spank my spoiled child’ at check-out. I never grasped how alone I feel everyday and despite being surrounded by so many people you are alone. I wish I would have known how strong I needed to have faith in God and develop that prior to a JHD diagnosis. I want others to know that you’re never going to get everything perfect and that every moment, no matter how unexciting it may seem is precious and not doing ‘BIG’ things is not a measure of your love. Give up YOUR expectations and allow your child to be who they are, and relaxing and not always pushing them to the limit is okay too. Daughter Megan has juvenile huntington’s disease. -Deena

carlos (36)The things (chores, tasks, messes, ect.) that seem really important at that moment, are not. They (those things) are Not life changing and you can’t and won’t get the time you spent doing them back. So, spend every moment you can with the ones you love and forget every thing and every one else who would take those extra seconds, minutes, hours, days and potential last moments from you. Son Carlos passed away at age 16 from juvenile huntington’s disease. -Crystal

rachel (2)I would tell a new parent to do all the research into jhd they possibly can. Also connect with others in the same position as they will need that support network for their sanity. They will become the expect on their child with this illness and will probably have to educate health professionals to. By speaking to other parents they will learn what has worked for their kids and what hasn’t in the way of medicines ect. Go into neuro/doctors appointments prepared with medicines you would like to discuss with them. Daughter Rachel passed away at age 20 from juvenile huntington’s disease. -Paula

justin (6)That most kids are trapped in a body they don’t want. Son Justin had juvenile huntington’s disease he passed away at 30 years old. -Marcy

ellie (28)It’s the scariest thing in the world, you can’t begin to imagine how awful this disease is, it destroys whole families, from one hd parent it can affect all children 50/50 risk, It’s not only eye colour and hair colour that you can inherit from your parents it’s this disease also, even though we lost Ellie to jhd at 16 yrs old 3 years ago my other two children aged 22 & 18 are terrified, BUT Ellie didn’t let juvenile huntingtons disease define her .. that was her sense of humour her strength her kindness and her bravery .. the disease is a roller coaster.. highs and lows.. live for the good days, brave the bad days and remember “we are all in this together”. -Samantha

tomeka and madina22Their not alone & their lives & feelings are similar to others here. So to ask questions & vent we understand. Daughters Tomeka age 26 and Madina age 10 passed away from juvenile huntington’s disease. -Esmeralda

allisonI just feel that the illness is so different for everyone and forever changing that there is nothing that either would surprise me or that I could tell someone to expect. Daughter Allison passed away at age 35 from juvenile huntington’s disease. -Howard

samantha (104)I hope that people understand the condition of a special person, and that they don’t said, I know, especially family members who know about the disease, and then, they see an abnormal attitude, and then they are telling me, look I told her, don’t do that, and she don’t listen, I try to explain about her brain condition, and is frustrated, when I see they don’t understand her condition. is hard to educate our own family. In my case it is not necessary, to tell my child about jhd👶 would not understand. Daughter Samantha has juvenile huntington’s disease. -Marilu

lucas and chris with their mom linda (3)What I would want someone new to JHD to know is this. You are not alone, get into online support , and with God and Jesus , there is a Way though this and he will renew your mind dayly. Our Heavenly Father is with us till they end.. I want People to Know Our Children did not ask for this ,and neither did the Gene carrier , jhd has a way of breaking a person’s spirit with deep pain and JHD has a Way if bringing out a Love that is unbreakable . Both child and caregivers ,parents in my case grandparent . Become fighters , great warrior’s. It’s a Amazing transition of the human Spirit and it can get very lonely, lonely for both or All . We find happiness in the smallest of accomplishments, being humble and grateful are easily done. Be kind And the last one What I would have wanted to Know ? I wish I had known Lucas had JHD and not had to wait until 17 . I wish I could have prepared , I wish I was financially prepared. Yet God has carried me , though it all . And as I layed one to rest , God gave me another , his little brother , and He once again is carrying us though the fire . It’s a tough question for me. Everything I’ve went though , every trial , every triumph , has brought me closer to the person I’ve wanted to be . And so I continue to pray for a cure , and the renewal of the mind. Finding Peace in this journey. Daughter Linda at age 36 passed away as did grandson Lucas at age 21 from juvenile huntington’s disease. Grandson Chris is still fighting jhd. -Karen

kathleen and laura (79)

That they have people that care about them… And although they feel alone in their journey.. We are here. Even if we don’t talk.. Or if we see each other every day. If you need someone or something just ask. ❤️ Niece Kathleen age 9 years old and sister Laura age 24 both passed away from juvenile huntington’s disease. In the photo it’s Laura, Laura’s Mom, Laura’s Daughter Kathleen, and Her Sister Holly -Holly

What’s your view on telling a child they’re sick with jhd vs just going along with it– 72% says tell them and 28% says don’t tell them.

I never told my Gabriel -Tristin

tayah (93)Tayah knows she has JHD. But does not know it will take her life and I’m not going to tell her. I’m sure most won’t agree but it’s my choice as her mother and I think it’s for the best. If I was to tell Tayah, I believe it would make her worse, she would panic and get depressed. For the most part she is still a happy girl that greatly enjoys life. Thankfully, unlike a lot of JHD kids, Tayah hasn’t witnessed what this disease does. I know many kids watched their dad or mom etc, suffer so of course you can’t hide it from them when they already know 😢. If Tayah was to ask me, I wouldn’t lie to her though. My other children know, though my ten year old doesn’t fully understand. I respect a patents choice to tell if they have jhd or not either way. And I hope people can respect ours We are the only ones that know our kids and what they can and cannot handle. Daughter Tayah has juvenile huntington’s disease.-Chloe

With Brandon he was older 15 we basically learned about it at the same time he was there in room every appointment never asked to talk to doctors alone it was his life he deserved to know what was happening to him and his body. With internet and people he would of found out eventually. Do what works for you family..-Maria

kelly 15This is each family’s choice. Generally it’s best to say there is an illness & give it a name. You Don’t want a child to incorrectly she/he is to blame. Also most children know more than what we think. Best not to insult her/him. Then it also depends upon a family’s religious belief system. Relatives, friends., professionals should respect parents’wishes. Use a developmental approach & tell kids as much as they ask. Do not overtell like adoption stories, sex ed info etc. Again very individual! Her daughter Kelly passed away from juvenile huntington’s disease at 30 years old. -Jean

cameron and alexia (3)I think it depends on the child, the age and mentality. I did not tell Cameron and Alexia knows but doesn’t really understand what it means. I don’t know if there is a right answer I think you have to just go with your instincts and what is right for you and your child. Son died of juvenile huntington’s disease at 14 years old. Cameron’s twin.. Daughter Alexia is still fighting.-Tina

zaavan (26)

This is where im confused of what to do. My son Zaavan knows somethings wrong with him and that he cant do certain things anymore. Other kids zoom past him and he wonders why. He even asks how hos dad died. Idk what to say. My mom says dont tell him it will scare him. But the other side wants me to so we can start focusing on his soul with god. Idk thats a tough one. Son Zaavan has juvenile huntington’s disease. -Heavenly

zaavan (19)I dont want my 9 year old grandson Zaavan to be scared and sad.. I believe if we tell him it would only do more harm then good..he would emotionally break down n fade away sooner..hes just a baby. Grandson Zaavan has juvenile huntington’s disease.- Tamela

I told my daughter so she knew the disease was what was keeping her from excelling in school the way she always had. I didn’t want her to feel bad & blame herself.- Holly

adiana (1)Each family is different. Some do, some won’t. Some are afraid to tell their child as they are afraid the child will commit suicide. Daughter Adiana had juvenile huntington’s disease passed at 12 years old.-Janice

phoebe (96)I never spoke about it with Phoebe. When she first got sick I told her that she was really sick and wouldn’t get better but that she wasn’t alone and I was by her side and would take care of her. As she got sicker she never asked and I never told her. I think she knew more than I thought but I just kept telling her she was loved and not alone and I would care for her. Daughter Phoebe passed away from juvenile huntington’s disease at 13 years old..- Annette

jay (75)God help me, I wish this disease never existed! I see no slowing, no plateauing only progression! My heart has been ripped to shreds from JHD/HD! Best quality of life you can give to your Child! Comfort, Love, Happiness, Memories, Family! Take a lot of Videos and Photos. Fight for your child, no matter what! Its extremely hard to watch, emotionally draining, physically exhausting! Finding help with nurses or family is important. I don’t know how much longer I have with my beautiful son Jay who has juvenile huntington’s disease, but I’m gonna love on him every single day and give him the best life I can!-Nikki

anthony (117)I haven’t actually said you have JHD yet all I have said is I’m so sorry you have to go through this baby boy. When the time is right I will tell him. It’s the only life he knows. We try to give him the best quality of life as possible right now and want him to enjoy what life he has left.💜💜💜 Anthony has juvenile huntington’s disease.-Jackie

3 Replies to “Important Insight From Experienced”

  1. God help me, I wish this disease never existed! I see no slowing, no plateauing only progression! My heart has been ripped to shreds from JHD/HD! Best quality of life you can give to your Child! Comfort, Love, Happiness, Memories, Family! Take a lot of Videos and Photos. Fight for your child, no matter what! Its extremely hard to watch, emotionally draining, physically exhausting! Finding help with nurses or family is important. I don’t know how much longer I have with my beautiful son Jay, but I’m gonna love on him every single day and give him the best life I can! Nikki

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: