I had never heard about this disease until I saw a yahoo news video about Kathleen Edward passing away today. I have served my country and have seen battle and death face to face. Some call me hero for what I did. I tell you now with no uncertainty in my heart. People with disease's like this and more so the children like this , that face a fight we can not even comprehend....are the true hero's. I am not afraid to say I cryed as I watched the child blow out the candles ON HER OWN with PRIDE!
My mom had HD and she passe away last year in May. I can't believe how bad this disease is. I can't imagine how she could live day to day with it. My thoughts and prayers are with you!
@miguelvacadas It's unfortunate that someone would go out of their way to show such lack of compassion towards another human life. It's enraging that someone would attempt to make a joke of a persons family. It's a shame that people that choose to be so ignorant and blatantly disrespecful would get the opportunity to live in this world and the two angels in this video had to leave us. I hope you can become more aware of what your words can do to someones heart and change your ways.
1st of all I CANNOT believe anyone would leave a thumbs down or negative comment to this video. I know a family who's father siffers from HD, it is so tragic, so sad, so hard for them to watch him deterioate. I dont have HD, but I do have a disease that causes me awful pain every day & I cannot imagine having something that also is so debilitating.
My dad died from HD, I got tested last week and came back negavtive, but my younger sisters was positive. She doesnt have any sympthoms yet though. I wish with all my heart for a cure for this f'kn disease. I believe in medicine, I hope them come up with something and soon
It really touched me when your sister showed everyone that she could blow out her candles on her own. I send you and your amazing family lots of love.
Thank you so much for puting this amazingly moving video up.
My mom is currently battling HD and both my nana and my uncle have passed away from it.
I recently got tested and it came back positive, but we are in such an incredible age of medicine, if it isnt irradicated in my lifetime, Im confident it will be in the next.
It's also humbling to see how many comments are from people who have HD or know people.
Stats are only numbers, it's real people who make the difference. Spread the word
@stacyxxy It's a dynamic DNA mutation (expansion of certain repetitive sequence); the more repeats, the worse it gets and the sooner it starts - children of HD patients have 50% chance of having HD too and it will be much faster and will start sooner. Children of HD patients *should* undergo an DNA analysis - if they have the mutant alelle, then they should never have children of their own - because passing a HD to you children is a cruel thing to do.
"Lion's Mane mushroom mycelium is nature's nutrients for your neurons." Small enough to pass through the blood-brain barrier, erinacines work from within the brain to promote NGF production, which in turn helps make more neurons.Small enough to pass through the blood-brain barrier,This process results in alleviating symptoms of Alzheimer's disease and even Parkinson's disease. Deprenyl provides selective protection against the age-related degeneration of the dopaminergic nervous system
@ultragarrison no, there is no cure ... there are treatments that counteract the symptoms, but does not make them disappear. is like brain surgery, but that it does is slow the progression of the disease
@Salisaad Now a days there are ways you can get pregnant and make sure from the start that your kid wont have the mutated gen. It is via in vitro, they select the normal embryos and put them into you. Thats quite a big advance :)
Whoa. I am very sorry from my heart about your loss. It is one thing to study this disease, quite another to see it in action. Thank you for this palpable loving audio video.
In addition to funding research for a cure, the government and insurance companies should provide free In-Vitro Fertilization (IVF) with Pre-Genetic Diagnosis (PGD) testing to exclude embryos with the HD gene to anyone at-risk for HD who wants it. Even those who don't want to know if they have HD can have kids that will never get the disease or be able to pass on the gene. HD could be eradicated in one generation, saving the government billions in future long term healthcare for HD patients.
My Mom suffered for six years from Parkinson's. She died last year. Such a dark part of life. Those who fight these tihngs with such dignity, strength and courage are heroes.
That is why two people who themselves don't carry the defective gene are able to have a child with huntingtons diseaseor have a child who is a carrier.
There is also the possibility of a child having a defective gene that produces symptoms similar to huntigtons but it is not really huntingtons.
Genetics are not that hard to understand, you just have to take a few hours to understand the basic principles of how it works in reproduction.
My grandmother has this disease. It's such a horrible thing. Her's is so bad that she can hardly eat. I haven't seen her since 2 years ago when she was taken out of a nursing home, but now she's back in it. It upsets me so bad that my family would do this to her. The last I heard was that she only had 6 months left. I love you Grandma, keep fighting.<3
My heart is with you God Bless....my neice suffers from Juvenile Huntingtons.....its a devastating condition. xxx My sister placed a video of her on You Tube today iv'e added it to my profile to raise awareness. xxxxx
All my love to you and your family. Sorry for your dear loss, your sister was beautiful and I only wish to have half the courage she and your father have.
I'm a grown man and this video made me cry. This video, and the ending to "The Green Mile" the first time I watched it, are the only times I've ever been driven to tears while watching video
@welwitcha2000 I really find your message here offensive...Its not our place to determine who is worthy of living and value of anothers life .Doctors happen to play a significant role in giving comfort and quality care to PEOPLE who are terminaly ill.Each one of us has our own personal journey while we live.I am sorry you have seemingly not come to value and understand this..Possibly it is you who is cowardly for being unable to except growth as a person when seeing others.
I'm confused...I see people writing HD is not 100% genetic. Do you guys mean its not 100% hereditary. hereditary meaning it runs in families and genetic meaning it has to do with your genes. Some diseases do not run in families at all but it is caused by an error or mutation in the genes. On another note, this video showed how her sister wanted to remain independent when blowing out the candles and pushing her mom away when she tried to blow them out. she seemed to have a great spirit.
@tajn239 she has been a great spirit to love.It is a genetic disease,once it occurs in a family it doesnt skip a generation and every child of an affected parent has a 50/50 chance of inhereting the defective gene.In less common cases it can occur without family history,however from that time forward the risk remains in each child born to an affected parent.hope I exsplained this in a clear manner?thank you for asking!
I just heard that this disease is caused by lack of an enzyme, and researchers found that mice with this disease lived longer than other affected mice when they are treated with that enzyme. I hope they quickly find treatment/medication for all the patient in the world.
@sabraelluver sorry for your loss. your video was touching and I hope that your family members are at peace and that you have peace as well in your grieving. i was having a bad day today, but this video made me stop in my tracks and think about each breath I take is a gift and to not sweat the small stuff.
@sabraelluver honestly mate i can't even express my feelings right now so i'll just go with the cliche stuff and say that i really hope they rest in peace for ever and ever ! Stay strong mate and always remember the good times.
@sabraelluver thank you for sharing this very moving story about your little sister and your dad. I'm very sorry to hear of your loss and pray that they are both resting in eternal peace and in our Lord's home. God bless you for your strength and for your perseverance! I will keep you in my thoughts and prayers.
@xXwAcKoGrRlXx Why does everyone keep saying, maybe youll get it or you might have it. Obviously she doesnt have it and way to put hope in her path. Honestly, I dont think comments like that are usefull to her in this painful time.
@minniemouse169 : There's a 50% chance she'll get it since her father has the disease. (It's 100% genetic.) On average, the symptoms don't show up until around their mid-30s and 40s. There's a test that can point out if she has the gene that causes it, but it's kinda useless since there's no cure for HD yet.
@xXwAcKoGrRlXx Everyone has the huntingdon gene btw. It's only if theres more codons in it that makes it a disease. And at the moment there are medical tablets to help
@jrosstx A genetic disorder is a disorder caused by genetic or chromosomal abnormalities. A disease does not have to follow strict inheritance patterns in order to be defined as genetic. In HD the mutation of either copy of the HTT gene can be inherited - as in the overwhelming majority of cases - or be a new mutation, though the occurrence is extremely rare. Either way, HD is 100% a genetic disorder.
We humans can have such great hopes yet have such deep pain and suffering. Life is fragile and often mysterious. Would knowing "why" we have to endure these things make the enduring any easier? Would it justify it?
This made me nearly cry, i am one of those people who have a 50/50 chance of getting this disease. I do not know much of the symptoms because i was hidden in the dark about it, now that i know i will soon be tested if i have it or not.
@ibrokemycar what happen if you positive having this desease, do people with huntington disease lost their mind or their body control? i'm sorry if my question hurt you but i just wanna know...
@slifergold everyone is unique on presentation,they dont lose their minds,but think diffrently,process slowly,short term memory loss.can have phsyciatric conditions,or physical,or both.The lil grl here had her mind til she took her last breath,her dad is aware and responded like any dad loseing his baby.
@slifergold the young grl makeing this video has juvenile onset HD/symptomatic for sometime now.a pretty special young lady,as many ppl Ive been privleged to meet with this disease. complicated to clearly define,but a good question
@ibrokemycar A piece of advice, if you like me test possitive, don't let it rule your life, don't let knowing you have the gene rule your life, stay possitive and try not to worry about it. I sincerely hope you tested negatuve.
@his299 Thank you so much! I havnt got tested yet but if it does turn out positive...I will try and stay positive in my life. I dont want it to rule my life! Thank you thank you thank you!
i'll be writing a paper about this disease, as it effects my best friends mother. i'm going to tell everyone about karli and your family's story. you are all in my thoughts and prayers.
I was so sad to read about Karli, my thoughts are with you and your family at this difficult time, I only hope that you can find some sollace, in the fact that through your clips about Karli you have brought knowledge about jhd, and hd, to so many people.
My fiance and his father and 2 uncles have it, theres treatment for it in London Ontario, there not actual treatment, but its just an experiment. Dr.Hayson, he's a very good doctor you should check him out.
This is a sad disease. It runs in my family. I stay up late every night reseaching it. Hoping to find something that will help me learn more. My father has it:/ I may have it :/ LETS FIND THE CURE!
That is so sad. I had to do a report on Huntington's Disease because I'm planning on going into the medical field and I have to learn about the various diseases. This is very sad, and I'm hoping for the day that Huntington disease will be curable.
So painful, so sorrowful, so unfair, Tears for the pain, the anguish, the goodbyes and for death: freed from this wasting body. words can't express the feeling of helplessness. Nobody deserves to go through it.
My great grandparent was misdiagnosed with Parkinson's. HD killed my grandpa at the age of 42 but not until he had 6 HD positive children, 1 unknown and just 2 negatives. My mom had 5 kids. Our fate is to care for our mother, watching helplessly trying to prevent her from sustaining brain trauma, trying the best we can to take safety measures until we go from being caregivers to patients or lifelong caretakers of our intergenerational familiy members testing positive of this ravaging disease
My thoughts are with you all. RIP Karli I never knew you but all I could do is cry when I found out that you have past away. You are a beautiful little girl now you are up in heaven with my mom who also had Huntingtons. Please watch over all of us. Jancey you are and amazing person and I wish I could have the strenght that you have someday.
I am living at risk for HD and my mother is developing symptoms of the disease. I have three beautiful children and am glad to be alive. Think what you will, but life in any form is a gift.
well looking at this from a broader picture... did your dad show symptoms later in life or was he like this in the begging? I get twitches sometimes the doctors say its early signs of Parkinson disease. Hope the best for your family... hard times such such hard times.
This comment has received too many negative votesshow
i think people living with huntingtons desiese should not have children if they no they carry the gene as i am a mother and i would not ike to see my child go through what that little girl is going through but i feel the depest sypathy for those who don't no they have it and have children. but i think its diskusting that if you no you have the gene and then deside to have children knowing that there is a 50/50 chance you child may have it it
I am one of those children whose mother decided to have me despite her knowing she had the illness. I live with that threat everyday, and lost my mother, but to say it's 'disgusting' to have a child is appalling. People can now chose a 'healthy' egg without the gene, and I for one and just grateful that I was given the opportunity to live. People lose parents everyday, so whether they have huntingdons or die in a car accident, parents with the disease are not bad people for wanting to live.
It's not disgusting dude, but let's sit for a moment. Having a child is a beautiful thing. Responsibility, is also, very beautiful. This is irresponsible. You have a responsibility to make sure your children can survive in this world. Why would you willingly risk your child, knowing there is no way you could under your power outlive them? To let them grow old with a disease they never deserved. I'm not trying to be cold, but people, we're not animals. We're human beings. We can be responsible.
I agree that people should take responsibility. But whether I know I'm going to die of HD, or whether I get run over tomorrow makes no difference. There are some things in life we can't control, but for me, I may have a few years left before I get symptoms, and I intend to travel and teach. Seeing my mother die was painful, but we had some beautiful moments, and they far outweigh the bad in my memory. I have two friends whose parents are dying, it makes no difference to them or me if they knew.
@eeyore24uk wow sorry for your loss..it's great to hear that you are well. it's also good to hear your point of view especially since you might have it.
@eeyore24uk ppl make comments about reproducing bc they want 2 play God. If there was a way 2 pick out the genes 2 make sure that babies were born 100% perfect & have no chance of getting ill earth would have at least 90% less people. Please tell me what credentials people have that makes them think its better 4 some not 2 have been born @ all. In your video I saw 2 happy ppl. Isn't it better to b happy & loved & 2 see this world 4 a moment than 2 never experience it? I thank God I was the one
ruby1968 I pray for sum ppl to gain wisdom and courage.its niave to think JHD kids ,or at risk, come into the world selfishly.or to assume parents dont bear a heartache larger than one can imagine IF it happens to their child..Im mom of these ppl.they share eeyores feelings of LIVING is a gift!they hold amazing honest insight to teach about LIVING,Im secure hate me, I need to share u r hurtful to many I care about,its not r place to judge,nor is it r place to shame nor decide a persons value
Ruby you have to understand that HD is relatively unknown, even in HD families themselves. People don't realise they are carrying a deadly gene when they have their children. It's not as simple as saying don't have kids.
Caring for HD patients should not stop for one minute, because who would know best how to meet the challenges huntington disease presents than the people who are faced with these challenges on a daily basis.
God bless all caregivers, they are the unknown soldiers. HD is not a killer, it teaches how to be patient and to give to those we love more than we take.
But at last i found that the most important thing for these innocent patients is the caregiverwho look at their face with smile give them confidence encourage them to walk ,to take to eat give them areal life not reading only.
I used internet and read everything about the disease, and every research done for HD , and print nearly 1000 papers on this disease for myself and all medicine which can used .
1991 in Germany in the city of visbaden the proffesor of the hospital told me, sorry ther is no cure or effective medicine for this disease. From that day i promise to work for her .
Ican now watch her doing all her normal activites alone without any help from me, she can cook tea,coffee and caramel , doing washing machine and all cleaning job without falling,it is abig victory and along storyof hard working day and night.
Caregivers are playing the key roll in curing Huntington disease patients. As a caregiver to my wife for 22 years who had HD since 1988. Iam realy happy and proud that i could bring her back to normal life.
I'm sorry about your Father & Sister. Damn shame things like this have to happen, espacially too people who don't deserve it! Life sure can be a crock of shit sometimes! I hope the best for all of you! xoxo :,)
i have a 50% chance of having this disease due to the inconsideration of my biological father who told my mother he had it and yet left us both on my first birthday. At 17 i want to find out if i do have this and then i can prepare myself however my parents don't think i should... i'm torn on what to do although legally they won't allow me to test until i'm 18 so i have a few months t wait :(
My advice to you is wait, I was in my thirties before I was tested in 2005. If you are as unfortunate as I was, and you test possitive, it will pray on your mind for years to come, you don't need that kind of stress at the age of 18.
However if you do go ahead I wish you the best of luck.
There is absolutely no one I know with the disease , I have read about it studying neurology and I wonder if it's regional since it's a mutation in the huntingtin protein combination anyway I wish you all health and the chance to live life as long and as well as you wish
1:57 "GTFO i can do it by myself !" but unfortunately she cannot. that's the frustrating part of being handicapped. you want something, and you will keep trying until you get it. just for the sake of pride because you did it yourself.. but people get upset and always want to help you. eventually, you think you are just a useless piece of shit and lose self confidence. at least if you can talk, you can kick people out but if you can't, that's frustrating.
my brother has this and you voicing your opioion when you no nothing about the subject really pisses me of.unless you see someone you love dieing with symptoms maybe then you can be less heartless
My little sister's friend was diagnosed this year with HD. Thanks for showing me exactly what HD looks like so I can help my sister cope with this and encourage her to be an even better friend. I'm so sorry that your life has been touched by this tragedy, and I will be praying for you all.
keenandwhat009,in YOUR world do ppl get tested for EVERY genetic condition before they are having children?Also I wonder is your world only seen in BLACK and WHITE?Can you share some facts about JHD or HD with us?please enlighten me!
I'd give anything for the wish she must have made whilst blowing the candles to come true
MrOppleberry 3 days ago
I had never heard about this disease until I saw a yahoo news video about Kathleen Edward passing away today. I have served my country and have seen battle and death face to face. Some call me hero for what I did. I tell you now with no uncertainty in my heart. People with disease's like this and more so the children like this , that face a fight we can not even comprehend....are the true hero's. I am not afraid to say I cryed as I watched the child blow out the candles ON HER OWN with PRIDE!
M4rifleguy 2 weeks ago 2
that part when she was trying to blow the candles... that's just so sad. i don't know what to say i just feel like shit now...
imANassANDiDONTcare 2 weeks ago
natural selection is what it is.
toolvari 1 month ago
My mom had HD and she passe away last year in May. I can't believe how bad this disease is. I can't imagine how she could live day to day with it. My thoughts and prayers are with you!
saturnvue24 3 months ago in playlist saturnvue24's favorites
@miguelvacadas It's unfortunate that someone would go out of their way to show such lack of compassion towards another human life. It's enraging that someone would attempt to make a joke of a persons family. It's a shame that people that choose to be so ignorant and blatantly disrespecful would get the opportunity to live in this world and the two angels in this video had to leave us. I hope you can become more aware of what your words can do to someones heart and change your ways.
uhchoo 3 months ago 5
i met karli... its so sad.. my aunt died from this diesease yesturday morning...
puppylovaar 3 months ago
Gosh, that is very sad. I'm so sorry about both of your close relatives.
CaitlinBrooksMusic 4 months ago
1st of all I CANNOT believe anyone would leave a thumbs down or negative comment to this video. I know a family who's father siffers from HD, it is so tragic, so sad, so hard for them to watch him deterioate. I dont have HD, but I do have a disease that causes me awful pain every day & I cannot imagine having something that also is so debilitating.
cmt49829 5 months ago
SORRY FOR YOU LOSS BEST WISHES FROM THE CABRERA FAMILY HERE IN VICTORVILE, CA
BONES675 6 months ago
....a hammer??? why would you say this please??....these people are real life human beings with feelings and family whom love them....
oscaandchloe 6 months ago
I still don't understand what HD is. Please explain.
reidrules45 6 months ago
@miguelvacadas You have a serious mental problem. This is a serious matter.
My mother died 6 + months ago, and you shouldn't be so cruel.
SonnePanda 6 months ago
This has been flagged as spam show
@SonnePanda You mother suck balls
miguelvacadas 6 months ago
@miguelvacadas not a chance
sabraelluver 7 months ago
28 days later DEAD AND DISEASES
teamhyperflashy 7 months ago
watch the first documentary about huntington disease in portuguese made in brazil, we're looking for channels to show it.
see on my profille, the " convivendo com a doença de huntington" video
wilsonhighlander 8 months ago
I'm so sorry for your loss. FUCK Huntington's Disease
DSidhu11 8 months ago
My dad died from HD, I got tested last week and came back negavtive, but my younger sisters was positive. She doesnt have any sympthoms yet though. I wish with all my heart for a cure for this f'kn disease. I believe in medicine, I hope them come up with something and soon
anniecash1 9 months ago
I'm so sorry. I 'm sorry for your loss. What an horrible horrible disease. I cried watching this video.
saharabutterfly 10 months ago
oh my god....that's sad =(
viktja 10 months ago
Such a terrible disease... so devistating and scary what it does to one's brain. I hope there will be a cure one day.
Bamchucknorris 10 months ago
It really touched me when your sister showed everyone that she could blow out her candles on her own. I send you and your amazing family lots of love.
star0shadows 10 months ago
i have hd my sister has hd my dad died of hd
MrStonedcoyote 11 months ago
I cried when I saw this. My dad has HD.
pikkutommi 11 months ago
Thank you so much for puting this amazingly moving video up.
My mom is currently battling HD and both my nana and my uncle have passed away from it.
I recently got tested and it came back positive, but we are in such an incredible age of medicine, if it isnt irradicated in my lifetime, Im confident it will be in the next.
It's also humbling to see how many comments are from people who have HD or know people.
Stats are only numbers, it's real people who make the difference. Spread the word
sceps32 11 months ago
god bless you...
PS3ownsALL14EVER 1 year ago
Thank you for sharing your family and this horrible disease with us! I hope they do find a cure for this...
crystalynn2006 1 year ago
Thank you for sharing your video.
kadie627 1 year ago
My wife is an (HD) petient as well
good new is aroiund the corner
amberjadexxx 1 year ago
My brother has this. As does my dad. my brother is not doing so well. my dad, i don't know, because no one will tell me anything. Bless You!!
fogcat1 1 year ago
why???? why do these horrible diseases exists....i just cant stop crying right now.
stacyxxy 1 year ago
@stacyxxy It's a dynamic DNA mutation (expansion of certain repetitive sequence); the more repeats, the worse it gets and the sooner it starts - children of HD patients have 50% chance of having HD too and it will be much faster and will start sooner. Children of HD patients *should* undergo an DNA analysis - if they have the mutant alelle, then they should never have children of their own - because passing a HD to you children is a cruel thing to do.
Salisaad 1 year ago
"Lion's Mane mushroom mycelium is nature's nutrients for your neurons." Small enough to pass through the blood-brain barrier, erinacines work from within the brain to promote NGF production, which in turn helps make more neurons.Small enough to pass through the blood-brain barrier,This process results in alleviating symptoms of Alzheimer's disease and even Parkinson's disease. Deprenyl provides selective protection against the age-related degeneration of the dopaminergic nervous system
ssssaaafff 1 year ago
Is there any cure for huntington's disease ???
ultragarrison 1 year ago
@ultragarrison no, there is no cure ... there are treatments that counteract the symptoms, but does not make them disappear. is like brain surgery, but that it does is slow the progression of the disease
vivianita7736 1 year ago
@ultragarrison No, you can just make symptoms milder. And not have children. Or lethal dose of morphium. Your choice.
Salisaad 1 year ago
@Salisaad Now a days there are ways you can get pregnant and make sure from the start that your kid wont have the mutated gen. It is via in vitro, they select the normal embryos and put them into you. Thats quite a big advance :)
anniecash1 9 months ago
Whoa. I am very sorry from my heart about your loss. It is one thing to study this disease, quite another to see it in action. Thank you for this palpable loving audio video.
Blessings
gsabra2 1 year ago 2
In addition to funding research for a cure, the government and insurance companies should provide free In-Vitro Fertilization (IVF) with Pre-Genetic Diagnosis (PGD) testing to exclude embryos with the HD gene to anyone at-risk for HD who wants it. Even those who don't want to know if they have HD can have kids that will never get the disease or be able to pass on the gene. HD could be eradicated in one generation, saving the government billions in future long term healthcare for HD patients.
swhitt21 1 year ago
God bless you and your family
davidwerifan 1 year ago
i cried when she blew out the candles my mother also sufferes from this fatal disease its been a long road and were not done yet i love you mom
domingue90 1 year ago
i'm sorry for your lost,my dad has this disease to.
dito4u 1 year ago
My Mom suffered for six years from Parkinson's. She died last year. Such a dark part of life. Those who fight these tihngs with such dignity, strength and courage are heroes.
jimdog1964 1 year ago
That is why two people who themselves don't carry the defective gene are able to have a child with huntingtons diseaseor have a child who is a carrier.
There is also the possibility of a child having a defective gene that produces symptoms similar to huntigtons but it is not really huntingtons.
Genetics are not that hard to understand, you just have to take a few hours to understand the basic principles of how it works in reproduction.
Butmunch666 1 year ago
Off course a small amount of cases occur in families with no history of the disease.
It's called genetic mutation, people can produce and do produce semen with dna that is slightly different.
This is just a mutation of a gene, it happens to people who have never had this in their family tree before. It is how we evolve.
When sperm is created small changes to the dna of the sperm can have beneficial or harmful effects.
Butmunch666 1 year ago
My grandmother has this disease. It's such a horrible thing. Her's is so bad that she can hardly eat. I haven't seen her since 2 years ago when she was taken out of a nursing home, but now she's back in it. It upsets me so bad that my family would do this to her. The last I heard was that she only had 6 months left. I love you Grandma, keep fighting.<3
sonicfan012 1 year ago
Thats so sad!!! Such a horrible disease!!
Hopfully someday someone will have a cure!!
:( x
imunckcock 1 year ago
My heart is with you God Bless....my neice suffers from Juvenile Huntingtons.....its a devastating condition. xxx My sister placed a video of her on You Tube today iv'e added it to my profile to raise awareness. xxxxx
TwittyWhit07 1 year ago
All my love to you and your family. Sorry for your dear loss, your sister was beautiful and I only wish to have half the courage she and your father have.
chadandnola 1 year ago
I'm a grown man and this video made me cry. This video, and the ending to "The Green Mile" the first time I watched it, are the only times I've ever been driven to tears while watching video
Wh0rse 1 year ago
@welwitcha2000 I really find your message here offensive...Its not our place to determine who is worthy of living and value of anothers life .Doctors happen to play a significant role in giving comfort and quality care to PEOPLE who are terminaly ill.Each one of us has our own personal journey while we live.I am sorry you have seemingly not come to value and understand this..Possibly it is you who is cowardly for being unable to except growth as a person when seeing others.
jym092000 1 year ago 4
God bless you...
Hankandthetanktops 1 year ago
a truly moving video!! well done for opening so many people minds to this disease...
xx RIP xx
nursienunu 1 year ago
i am living with HD My dad died this august will be 3yrs i one sister and brother who having been tested . i have three girls its so sad
melissapontremoli 1 year ago
I'm confused...I see people writing HD is not 100% genetic. Do you guys mean its not 100% hereditary. hereditary meaning it runs in families and genetic meaning it has to do with your genes. Some diseases do not run in families at all but it is caused by an error or mutation in the genes. On another note, this video showed how her sister wanted to remain independent when blowing out the candles and pushing her mom away when she tried to blow them out. she seemed to have a great spirit.
tajn239 1 year ago
@tajn239 she has been a great spirit to love.It is a genetic disease,once it occurs in a family it doesnt skip a generation and every child of an affected parent has a 50/50 chance of inhereting the defective gene.In less common cases it can occur without family history,however from that time forward the risk remains in each child born to an affected parent.hope I exsplained this in a clear manner?thank you for asking!
jym092000 1 year ago
none of this is fair, so sad, how much can a person take
carol4nn 1 year ago
May God help them and cure them <3
noran17 1 year ago
this immediately made me cry. huntingtons is a terrible disease and i am praying for you and your family.
sourpatchkid3 1 year ago
this video touches my heart it really does.
such a meaningful video, god bless.
AshTaylor93 1 year ago 2
sabraelluver, thank you for this video... I am inspired by your courage and your love. May you dad and sister rest in peace.
makien 1 year ago
1:53 Who wants a piece of cake?
Rammstein8814 1 year ago
we have a jhd website up called jhdkids
sabraelluver 1 year ago
you have positive for huntington's too?
im sorry for ur family
Bahamut347 1 year ago
I'm so sorry for your loss.
DubstepDinosaur 1 year ago
I just heard that this disease is caused by lack of an enzyme, and researchers found that mice with this disease lived longer than other affected mice when they are treated with that enzyme. I hope they quickly find treatment/medication for all the patient in the world.
oldparrot 1 year ago
i would like to say i feel sorry for your fammely
this diease is also afecting my famely. my mom died on age 50.
she had the motoric form
my brother now age 34 has the beginning of it (los of memory)
i would like to say keep it up and make the best of it
and make that evry day count for them
MrReddragon29 1 year ago
@sabraelluver : I guess you since you posted this video. Well, it can apply to anyone with a parent who suffers from HD.
xXwAcKoGrRlXx 1 year ago
@xXwAcKoGrRlXx I already tested pos or jhd
sabraelluver 1 year ago
@sabraelluver ..... I'm sorry. Make the most out of life! Woot woot. Idk.
xXwAcKoGrRlXx 1 year ago
my daddy from this vid passed away last night and karli passed away in febuary god bless yous
sabraelluver 1 year ago 26
@sabraelluver My condolences.
minniemouse169 1 year ago
@sabraelluver God bless you and your family.
minniemouse169 1 year ago
@sabraelluver sorry for your loss. your video was touching and I hope that your family members are at peace and that you have peace as well in your grieving. i was having a bad day today, but this video made me stop in my tracks and think about each breath I take is a gift and to not sweat the small stuff.
brooksandmore 1 year ago
@sabraelluver I am so sorry. God bless you.
RUBYJMARCY 1 year ago
@sabraelluver honestly mate i can't even express my feelings right now so i'll just go with the cliche stuff and say that i really hope they rest in peace for ever and ever ! Stay strong mate and always remember the good times.
azaas 1 year ago
@sabraelluver am so sorry for your loss
carol4nn 1 year ago
@sabraelluver God bless you, truly beautyful people, all my love to your heart to reconfort your lost
RainingTokyo 1 year ago
@sabraelluver this is a beautiful video. I'm so sorry for your loss.
bluvd83 1 year ago
@sabraelluver i am terribly sorry for you loss's thanks for the vid very sad story ive seen for hd
chrisbre1128 1 year ago
@sabraelluver thank you for sharing this very moving story about your little sister and your dad. I'm very sorry to hear of your loss and pray that they are both resting in eternal peace and in our Lord's home. God bless you for your strength and for your perseverance! I will keep you in my thoughts and prayers.
mygalmo 1 year ago
@sabraelluver, I am so sorry.
I can't say anything else. I'm watching my grandmother die of cancer, so I kind of know how you feel. I hope you're okay
abberz3589 1 year ago
@sabraelluver
I am very sorry for your dad and your sister. All the best wishes from germany...
MisterBrauner 9 months ago
@sabraelluver Wow, eso fue muy fuerte. Dios los tenga en su gloria y descansen en paz. Dios te bendiga a ti y toda tu familia. :'(
peyl 4 months ago
sad,very sad ='(
mikysek100 1 year ago
Wow. i didn't know kids could get it as well. I hope you don't get it.
xXwAcKoGrRlXx 1 year ago
@xXwAcKoGrRlXx Why does everyone keep saying, maybe youll get it or you might have it. Obviously she doesnt have it and way to put hope in her path. Honestly, I dont think comments like that are usefull to her in this painful time.
minniemouse169 1 year ago
@minniemouse169 : There's a 50% chance she'll get it since her father has the disease. (It's 100% genetic.) On average, the symptoms don't show up until around their mid-30s and 40s. There's a test that can point out if she has the gene that causes it, but it's kinda useless since there's no cure for HD yet.
xXwAcKoGrRlXx 1 year ago
@xXwAcKoGrRlXx Everyone has the huntingdon gene btw. It's only if theres more codons in it that makes it a disease. And at the moment there are medical tablets to help
crazzer123 1 year ago
@xXwAcKoGrRlXx This disease is not 100% genetic. A very small percentage of cases occur in individuals with no family history of the disease.
jrosstx 1 year ago
@jrosstx A genetic disorder is a disorder caused by genetic or chromosomal abnormalities. A disease does not have to follow strict inheritance patterns in order to be defined as genetic. In HD the mutation of either copy of the HTT gene can be inherited - as in the overwhelming majority of cases - or be a new mutation, though the occurrence is extremely rare. Either way, HD is 100% a genetic disorder.
Kalevala87 1 year ago
I have this terrible disease and Im scared about whats going to happen, Neither of my parents had it, it was sporadic in me(at random)
Jizzle1005 1 year ago
We humans can have such great hopes yet have such deep pain and suffering. Life is fragile and often mysterious. Would knowing "why" we have to endure these things make the enduring any easier? Would it justify it?
jimdog1964 1 year ago
This made me nearly cry, i am one of those people who have a 50/50 chance of getting this disease. I do not know much of the symptoms because i was hidden in the dark about it, now that i know i will soon be tested if i have it or not.
Im really scared.
ibrokemycar 1 year ago
@ibrokemycar what happen if you positive having this desease, do people with huntington disease lost their mind or their body control? i'm sorry if my question hurt you but i just wanna know...
slifergold 1 year ago
@slifergold everyone is unique on presentation,they dont lose their minds,but think diffrently,process slowly,short term memory loss.can have phsyciatric conditions,or physical,or both.The lil grl here had her mind til she took her last breath,her dad is aware and responded like any dad loseing his baby.
jym092000 1 year ago
@slifergold the young grl makeing this video has juvenile onset HD/symptomatic for sometime now.a pretty special young lady,as many ppl Ive been privleged to meet with this disease. complicated to clearly define,but a good question
jym092000 1 year ago
@ibrokemycar A piece of advice, if you like me test possitive, don't let it rule your life, don't let knowing you have the gene rule your life, stay possitive and try not to worry about it. I sincerely hope you tested negatuve.
his299 1 year ago
@his299 Thank you so much! I havnt got tested yet but if it does turn out positive...I will try and stay positive in my life. I dont want it to rule my life! Thank you thank you thank you!
ibrokemycar 1 year ago
god bless u & ur family! stay strong always =)
yevonn1991 1 year ago
sucks to know you have the gene when your young not to mention having the disease
danthemanzizzle 1 year ago
i'll be writing a paper about this disease, as it effects my best friends mother. i'm going to tell everyone about karli and your family's story. you are all in my thoughts and prayers.
peedys09 1 year ago
I was so sad to read about Karli, my thoughts are with you and your family at this difficult time, I only hope that you can find some sollace, in the fact that through your clips about Karli you have brought knowledge about jhd, and hd, to so many people.
his299 1 year ago
My fiance and his father and 2 uncles have it, theres treatment for it in London Ontario, there not actual treatment, but its just an experiment. Dr.Hayson, he's a very good doctor you should check him out.
570love 1 year ago
Huntexil -I think think this is is it
maddyke1631 1 year ago
Perhaps there is a little light -very good results fase 3. NeuroSearch .
Go search it
maddyke1631 1 year ago
this disease affects everyone! It is hell!
galestormn 1 year ago
god bless you and your family
chunkymonk74 1 year ago 21
This is a sad disease. It runs in my family. I stay up late every night reseaching it. Hoping to find something that will help me learn more. My father has it:/ I may have it :/ LETS FIND THE CURE!
peaceisloveforus 1 year ago
That is so sad. I had to do a report on Huntington's Disease because I'm planning on going into the medical field and I have to learn about the various diseases. This is very sad, and I'm hoping for the day that Huntington disease will be curable.
Magenta73 1 year ago
everytime i watch this video i cry...
mrsmcdonald5 1 year ago
watching this Plummets me into sadness, i am so sorry that toughs people have to live through that suffering.
millicent1990 1 year ago
So painful, so sorrowful, so unfair, Tears for the pain, the anguish, the goodbyes and for death: freed from this wasting body. words can't express the feeling of helplessness. Nobody deserves to go through it.
glo85ria 1 year ago
May these precious individuals find wholeness of life in the presence of God for all eternity.
rvhelm 1 year ago
I miss you Karli so I'm Watching your videos with tears, I love you and wish I could hug you one last time. RIP princess
Your and inspiration.
beaubaby100 1 year ago
that;s sad. it made me cry, but it makes you realize that it doesnt matter what colour your or how old you are.
imagawjez99 1 year ago
My great grandparent was misdiagnosed with Parkinson's. HD killed my grandpa at the age of 42 but not until he had 6 HD positive children, 1 unknown and just 2 negatives. My mom had 5 kids. Our fate is to care for our mother, watching helplessly trying to prevent her from sustaining brain trauma, trying the best we can to take safety measures until we go from being caregivers to patients or lifelong caretakers of our intergenerational familiy members testing positive of this ravaging disease
rambrosebutterfly 1 year ago
:( i feel bad 4 every1 in that vid
LoveStar127 1 year ago
that vid is scary
Margaret5313 1 year ago
My thoughts are with you all. RIP Karli I never knew you but all I could do is cry when I found out that you have past away. You are a beautiful little girl now you are up in heaven with my mom who also had Huntingtons. Please watch over all of us. Jancey you are and amazing person and I wish I could have the strenght that you have someday.
widthing1125 1 year ago
RIP Karli, please say hello to my boys for me. You will be sadly missed. Thanks Jacey for these fantastic videos - you are a real fighter too. xx
time4sleeping 1 year ago
Four people in one family. What a tragedy. So sorry.
meta4strm 1 year ago
My heart goes out to you. I wish you and your family all the best.
seanthepartyboy 1 year ago
this is so sad im studying it for a report and i can hardley watch without crying so many people r dieing from this and other diseases =[
xototallyhotxo 1 year ago
I am living at risk for HD and my mother is developing symptoms of the disease. I have three beautiful children and am glad to be alive. Think what you will, but life in any form is a gift.
katrinakayt 1 year ago
Wow. That was really hard to watch. :(
nynaeveceleste 2 years ago
My father got the hungtinton disease. Really sad.
ultragarrison 2 years ago
well looking at this from a broader picture... did your dad show symptoms later in life or was he like this in the begging? I get twitches sometimes the doctors say its early signs of Parkinson disease. Hope the best for your family... hard times such such hard times.
oddsource 2 years ago
This comment has received too many negative votes show
i think people living with huntingtons desiese should not have children if they no they carry the gene as i am a mother and i would not ike to see my child go through what that little girl is going through but i feel the depest sypathy for those who don't no they have it and have children. but i think its diskusting that if you no you have the gene and then deside to have children knowing that there is a 50/50 chance you child may have it it
TheRuby1968 2 years ago
I am one of those children whose mother decided to have me despite her knowing she had the illness. I live with that threat everyday, and lost my mother, but to say it's 'disgusting' to have a child is appalling. People can now chose a 'healthy' egg without the gene, and I for one and just grateful that I was given the opportunity to live. People lose parents everyday, so whether they have huntingdons or die in a car accident, parents with the disease are not bad people for wanting to live.
eeyore24uk 2 years ago 30
It's not disgusting dude, but let's sit for a moment. Having a child is a beautiful thing. Responsibility, is also, very beautiful. This is irresponsible. You have a responsibility to make sure your children can survive in this world. Why would you willingly risk your child, knowing there is no way you could under your power outlive them? To let them grow old with a disease they never deserved. I'm not trying to be cold, but people, we're not animals. We're human beings. We can be responsible.
strikerk 1 year ago
i agree
LoveStar127 1 year ago
I agree that people should take responsibility. But whether I know I'm going to die of HD, or whether I get run over tomorrow makes no difference. There are some things in life we can't control, but for me, I may have a few years left before I get symptoms, and I intend to travel and teach. Seeing my mother die was painful, but we had some beautiful moments, and they far outweigh the bad in my memory. I have two friends whose parents are dying, it makes no difference to them or me if they knew.
eeyore24uk 1 year ago
@eeyore24uk wow sorry for your loss..it's great to hear that you are well. it's also good to hear your point of view especially since you might have it.
slamnxgirlxjulie 1 year ago
@eeyore24uk ppl make comments about reproducing bc they want 2 play God. If there was a way 2 pick out the genes 2 make sure that babies were born 100% perfect & have no chance of getting ill earth would have at least 90% less people. Please tell me what credentials people have that makes them think its better 4 some not 2 have been born @ all. In your video I saw 2 happy ppl. Isn't it better to b happy & loved & 2 see this world 4 a moment than 2 never experience it? I thank God I was the one
RUBYJMARCY 1 year ago
@eeyore24uk totally agree with you.
god bless you x
AshTaylor93 1 year ago
ruby1968 I pray for sum ppl to gain wisdom and courage.its niave to think JHD kids ,or at risk, come into the world selfishly.or to assume parents dont bear a heartache larger than one can imagine IF it happens to their child..Im mom of these ppl.they share eeyores feelings of LIVING is a gift!they hold amazing honest insight to teach about LIVING,Im secure hate me, I need to share u r hurtful to many I care about,its not r place to judge,nor is it r place to shame nor decide a persons value
jym092000 2 years ago
Ruby you have to understand that HD is relatively unknown, even in HD families themselves. People don't realise they are carrying a deadly gene when they have their children. It's not as simple as saying don't have kids.
just1moreperson 2 years ago 2
This is really sad, god bless her and her family.
15tennisstar 2 years ago
Caring for HD patients should not stop for one minute, because who would know best how to meet the challenges huntington disease presents than the people who are faced with these challenges on a daily basis.
nonocat76 2 years ago
this si so sad i watched my mum go through this till she died last year and now i know i got it so waiting for the same things to happen to me
Rogers1000 2 years ago
@Rogers1000 MAY GOD BE WITH YOU REJOICE IN ALL THE HAPPY MOMENTS .PLEASE BE STRONG AND KEEP YOUR SPIRITS HIGH.
NATY2811 2 years ago
We should be careful to the complications related to swallowing difficulties, falling, chocking and respiratory complication.
nonocat76 2 years ago
God bless all caregivers, they are the unknown soldiers. HD is not a killer, it teaches how to be patient and to give to those we love more than we take.
nonocat76 2 years ago
But at last i found that the most important thing for these innocent patients is the caregiverwho look at their face with smile give them confidence encourage them to walk ,to take to eat give them areal life not reading only.
nonocat76 2 years ago
I used internet and read everything about the disease, and every research done for HD , and print nearly 1000 papers on this disease for myself and all medicine which can used .
nonocat76 2 years ago
1991 in Germany in the city of visbaden the proffesor of the hospital told me, sorry ther is no cure or effective medicine for this disease. From that day i promise to work for her .
nonocat76 2 years ago
Ican now watch her doing all her normal activites alone without any help from me, she can cook tea,coffee and caramel , doing washing machine and all cleaning job without falling,it is abig victory and along storyof hard working day and night.
nonocat76 2 years ago
Caregivers are playing the key roll in curing Huntington disease patients. As a caregiver to my wife for 22 years who had HD since 1988. Iam realy happy and proud that i could bring her back to normal life.
nonocat76 2 years ago
i watch my mom go through this everyday.
i cant help but crying when i watch this. you have such a beautiful family.
dirtyduckpub300 2 years ago
Thank you for sharing & reminding me how lucky I am!
Stay strong.
happynurse63 2 years ago
You are very brave man.
Ekkaiadil 2 years ago
I'm sorry about your Father & Sister. Damn shame things like this have to happen, espacially too people who don't deserve it! Life sure can be a crock of shit sometimes! I hope the best for all of you! xoxo :,)
watchensee 2 years ago
this video made me cry. ): this is the kind of stuff i can't understand. it's not fair.
chaxOtic 2 years ago
i have a 50% chance of having this disease due to the inconsideration of my biological father who told my mother he had it and yet left us both on my first birthday. At 17 i want to find out if i do have this and then i can prepare myself however my parents don't think i should... i'm torn on what to do although legally they won't allow me to test until i'm 18 so i have a few months t wait :(
kymmathy 2 years ago
My advice to you is wait, I was in my thirties before I was tested in 2005. If you are as unfortunate as I was, and you test possitive, it will pray on your mind for years to come, you don't need that kind of stress at the age of 18.
However if you do go ahead I wish you the best of luck.
his299 2 years ago
thank you so much for your advice i'm really going to have to think about this but your video and advice is eye opening/amazing thank you so much! xx
kymmathy 2 years ago
I'm afraid that the video isn't mine, but you are right, it is amazing.
his299 2 years ago
i'm 21 and i also plan on getting tested. i wanted to when i was 18, but its an expensive test, and my family couldnt afford it.
you're also required to meet with a counselor before you get the results, incase they turn out to be positive.
i hope you hear good news if and when you get the test
MyBrainIsMush 2 years ago
may the luck of the irish be with you, you'll be in my prayers
KCstreets 2 years ago
This has been flagged as spam show
FUCKING HILARIOUS. i have never seen something so funny since my blind cousin walked into a fire hydrant
SNAZZYGOLDFISHES 2 years ago
im balwing when she's trying to blow out her candles... it's so sad.
jasnstrom7 2 years ago
God bless you...Im so sorry...
:(
Ribex23 2 years ago
this is so sad:(
Alex1000mexi 2 years ago
So sorry to hear about this...
all the best to your family
Saiyanmanz 2 years ago
Very sad:( all the best 4u and your family
<3
Chookie369 2 years ago
There is absolutely no one I know with the disease , I have read about it studying neurology and I wonder if it's regional since it's a mutation in the huntingtin protein combination anyway I wish you all health and the chance to live life as long and as well as you wish
ConstantC4 2 years ago
God bless you
cmmassey8 2 years ago 2
1:57 "GTFO i can do it by myself !" but unfortunately she cannot. that's the frustrating part of being handicapped. you want something, and you will keep trying until you get it. just for the sake of pride because you did it yourself.. but people get upset and always want to help you. eventually, you think you are just a useless piece of shit and lose self confidence. at least if you can talk, you can kick people out but if you can't, that's frustrating.
zecle 2 years ago
May God comfort you with His peace and give you as you need.
<3
BeatIesfan 2 years ago
my brother has this and you voicing your opioion when you no nothing about the subject really pisses me of.unless you see someone you love dieing with symptoms maybe then you can be less heartless
mzbiitch01 2 years ago
My little sister's friend was diagnosed this year with HD. Thanks for showing me exactly what HD looks like so I can help my sister cope with this and encourage her to be an even better friend. I'm so sorry that your life has been touched by this tragedy, and I will be praying for you all.
DareLouise 2 years ago
also, the man in this video reminds me so much of my father...
he's in the very late stages at this point. he cant walk, cant eat, and every day it gets harder to understand what he's trying to say.
my brother and i could both potentially have HD, but neither of us has had our blood tested to find out... and i'm not sure i'd want to know
MyBrainIsMush 2 years ago
Comment removed
keenandwhat009 2 years ago
keenandwhat009,in YOUR world do ppl get tested for EVERY genetic condition before they are having children?Also I wonder is your world only seen in BLACK and WHITE?Can you share some facts about JHD or HD with us?please enlighten me!
jym092000 2 years ago
Comment removed
keenandwhat009 2 years ago