I just wanted to say I am praying for you guys and I know how you feel. My monther had Huntington's Chorea. She died when I was 9. I remember having to deal with that and caring for her at such a young age. It is hard. I also worry that my sister and I will get it. I don't know anyone from my monthers family. All I do know is her mother passed away and my mom's sister passed away from it. I know it is tough but just keep you faith and you can deal with anything. God bless you!
I'm so sorry for your loss . This is soo sad, I'm in freaking tears, I had no idea about this disease thank you for informing us all about a disease so few know about. May God bless you .
My brother has this. and it is possibly one of the worst. watching them deteriate everyday. from a teen who was moody. to a young adult who started having problems with walking. to now a 30 year old who is bed ridden who cant move.talk.walk and eat any solids. hes been hospitilized for 6 years and just waiting for him to be at ease. i sympathize with any family who goes through this ts not easy on any family. me 17 had to watch him get dissed when i was young. to now. all the best out there.
So sorry for your loss my husband family have that disease very bad I saw how it can affect people they had about 10 family member with the Huntington's Disease.
Any one who can say just get an abortion has know idea what its like to be told you have no right to live as i have just becouse my dad has the gene . Im here and have the right to live and even if that is going to be a short life im happy with it and happy to have live it . All people who get tested need our love and prayers and are very brave . Its not just some you should do just like that it could change you life for ever GOD BLESS YOU ALL
I don t understand why so many people still have that disease. When I know that me or my partner has the gene, I DO NOT have children, unless I test the fetus and have an abortion , if it is positive. Anything else is just extremely cruel and careless.If your breeding drive is overwhelming: The world is full of needy children to be adopted.
@Seewolfman - MANY people don't find out until it is too late. They already have a family and suddenly they find out that the reason their parent or grandparent has been so off all these years is because of Huntington's. It also used to be that any mental illness was an embarassment and the family didn't talk about it. My birthmom just got diagnosed after she had 4 children, because her parents never told her, and now I'm at-risk. We are just now getting families who are more open about it.
people with HD in the family that are not affected and want to have children should do the children IN VITRO. so they don't born with possibility of having HD
So wait this girl never got tested? Oh great! she will put her children through what she went through with her mother! that sounds very humanitarian to me...sick people! GET TESTED! the fear will lead to another life being torture
& the guilt for 8 years of not going to see him when I know I should have...so much pain.
Tomorrow, I am suppose to go to the nursing home where he has been cared & visit for the very 1st time. I am terrified. I pray to find the strength, I so want to be brave, but the 10 year old child inside me will not stop crying.
Thank you for sharing your story Jenny, you are not alone & your bravery lifts me up & makes me believe...just maybe, I can be brave too!
Today, I know I am fine. I know my daughter will never have to worry & my grandson will be healthy which are all such wonderful blessings & yet, it is still so very bittersweet.
You see...my brother has it. Out of the 3 children that could have inherited this disease, only 1 did. But alas...more guilt. Guilt for being well, guilt for his life that had been taken from him, guilt for the fear of watching his study decline & the choice to not do it,
How was I ever to know it would be the very last time.
I carried that guilt with me for years, thinking if only I had been home, maybe I could have stopped her. As you & I both know now with time & wisdom, if it hadn't been that moment...it would have been another.
I never got tested, the fear was just too great. I chose to have 1 child & then tie my tubes,as the fear of passing along this devastating disease was just too scary.
Your story is my story, we are one in our pain & fear & strength.
I'm 54 & yet still the 15 year old child who's Mother committed suicide while I was away on a summer vacation.
She had been diagnosed with HD when I was 10. My parents had also gotten divorced & my little sister & I lived at home with her trying to understand this disease that was consuming her. We talked on the phone the night she died & I thought how odd her voice was as she told me she loved me.
My father is 86 and very sick with it. There are 3 of us kids of his, my sister got tested, she's ok. That leaves me & the other sister still at risk. Sometimes thinking about this sickens me to the core.
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 is in the middle/late stages of huntington's disease so I can relate. It's definitely hard to watch right now. I have yet to be tested either. Thanks for making this video. Hopefully a cure will be found soon. Take care.
This is reaaly sad I saw it three times now. Can u believe she is one of my teachers at Faiss Middle School! She so funny and nice. Shes the one who started a club called Best Buddies! UR THE BEST TEACHER IN DA WORLD MRS. ROGERS
My 17 yrd old neice has Juvenile Huntingtons she was diagnosed a couple of years ago......shes my star...her video is on my page xx My heart is with all the familys affected by this condition xx
hi jenny, my name is celina, i'm from romania but i'm living in italy, i also i care a person with hd and she died under my eyes, it was a terible experience, i hope that i will find the corrage to go on... i wod like speak whith you, if you want you can find me on facebook, my name is celina patrasc... i don't know to write very well in inglish, i hope you understend... i sent you a big hug and many kiss... be care you self... by...
God bless you Jenny!...my daughter in law and her siblings have HD ..stay as strong as you can for as long as you can and make sure you arrange for your future care!
Such a touching video... I am sorry you and your family had to go trough that... I wish you all the best...
MawieLove 1 week ago
I just wanted to say I am praying for you guys and I know how you feel. My monther had Huntington's Chorea. She died when I was 9. I remember having to deal with that and caring for her at such a young age. It is hard. I also worry that my sister and I will get it. I don't know anyone from my monthers family. All I do know is her mother passed away and my mom's sister passed away from it. I know it is tough but just keep you faith and you can deal with anything. God bless you!
kathvwhit 1 week ago
Im going to have to go through this.. <\3
hannah7581 2 weeks ago
I'm so sorry for your loss . This is soo sad, I'm in freaking tears, I had no idea about this disease thank you for informing us all about a disease so few know about. May God bless you .
MulattaPride 1 month ago
God forgive me for complaining about my wrestless leg syndrome.
DragonDriver100 1 month ago
My brother has this. and it is possibly one of the worst. watching them deteriate everyday. from a teen who was moody. to a young adult who started having problems with walking. to now a 30 year old who is bed ridden who cant move.talk.walk and eat any solids. hes been hospitilized for 6 years and just waiting for him to be at ease. i sympathize with any family who goes through this ts not easy on any family. me 17 had to watch him get dissed when i was young. to now. all the best out there.
ashleighbriar 1 month ago
So sorry for your loss my husband family have that disease very bad I saw how it can affect people they had about 10 family member with the Huntington's Disease.
mrsedgerson 2 months ago
I wish you well.
ecocentricity1345 2 months ago
only way to fix this, is to do it infetrio dna manipulation on the #4 chromosome. maybe in the far future we can fix it, but no cure ever.
miller6604 2 months ago
Any one who can say just get an abortion has know idea what its like to be told you have no right to live as i have just becouse my dad has the gene . Im here and have the right to live and even if that is going to be a short life im happy with it and happy to have live it . All people who get tested need our love and prayers and are very brave . Its not just some you should do just like that it could change you life for ever GOD BLESS YOU ALL
saigondaisy 4 months ago 2
What a inspirational video. Too many people take their life for granted. Jennys book was lovely x
katystudentnurse 4 months ago
I don't have the disease, or any other else and I know this is irrevelant but; I really hope I get married one day.
peterinfamilyguy 4 months ago
I don t understand why so many people still have that disease. When I know that me or my partner has the gene, I DO NOT have children, unless I test the fetus and have an abortion , if it is positive. Anything else is just extremely cruel and careless.If your breeding drive is overwhelming: The world is full of needy children to be adopted.
Seewolfman 5 months ago
@Seewolfman - MANY people don't find out until it is too late. They already have a family and suddenly they find out that the reason their parent or grandparent has been so off all these years is because of Huntington's. It also used to be that any mental illness was an embarassment and the family didn't talk about it. My birthmom just got diagnosed after she had 4 children, because her parents never told her, and now I'm at-risk. We are just now getting families who are more open about it.
AveriNON 4 months ago
people with HD in the family that are not affected and want to have children should do the children IN VITRO. so they don't born with possibility of having HD
GiGmartim 1 year ago 6
So wait this girl never got tested? Oh great! she will put her children through what she went through with her mother! that sounds very humanitarian to me...sick people! GET TESTED! the fear will lead to another life being torture
anapao89 1 year ago
very sad video makes you so sad i have huntingtons and lots must done too help find a cure for this evil
disase and help scientitst find a cure for this and too do research being positve
and happy in life .
mirandakilnan 1 year ago
& the guilt for 8 years of not going to see him when I know I should have...so much pain.
Tomorrow, I am suppose to go to the nursing home where he has been cared & visit for the very 1st time. I am terrified. I pray to find the strength, I so want to be brave, but the 10 year old child inside me will not stop crying.
Thank you for sharing your story Jenny, you are not alone & your bravery lifts me up & makes me believe...just maybe, I can be brave too!
Hoping for a cure & praying for time...
vintagesusie 1 year ago 2
Today, I know I am fine. I know my daughter will never have to worry & my grandson will be healthy which are all such wonderful blessings & yet, it is still so very bittersweet.
You see...my brother has it. Out of the 3 children that could have inherited this disease, only 1 did. But alas...more guilt. Guilt for being well, guilt for his life that had been taken from him, guilt for the fear of watching his study decline & the choice to not do it,
vintagesusie 1 year ago
How was I ever to know it would be the very last time.
I carried that guilt with me for years, thinking if only I had been home, maybe I could have stopped her. As you & I both know now with time & wisdom, if it hadn't been that moment...it would have been another.
I never got tested, the fear was just too great. I chose to have 1 child & then tie my tubes,as the fear of passing along this devastating disease was just too scary.
vintagesusie 1 year ago
Sweet Jenny...
Your story is my story, we are one in our pain & fear & strength.
I'm 54 & yet still the 15 year old child who's Mother committed suicide while I was away on a summer vacation.
She had been diagnosed with HD when I was 10. My parents had also gotten divorced & my little sister & I lived at home with her trying to understand this disease that was consuming her. We talked on the phone the night she died & I thought how odd her voice was as she told me she loved me.
vintagesusie 1 year ago
My father is 86 and very sick with it. There are 3 of us kids of his, my sister got tested, she's ok. That leaves me & the other sister still at risk. Sometimes thinking about this sickens me to the core.
jatteam 1 year ago
@jatteam I hope you are fine
rosinasweetheart 1 year ago
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 2
My mom is in the middle/late stages of huntington's disease so I can relate. It's definitely hard to watch right now. I have yet to be tested either. Thanks for making this video. Hopefully a cure will be found soon. Take care.
Liz
lizlicious21 1 year ago
This is reaaly sad I saw it three times now. Can u believe she is one of my teachers at Faiss Middle School! She so funny and nice. Shes the one who started a club called Best Buddies! UR THE BEST TEACHER IN DA WORLD MRS. ROGERS
XXGurl091 1 year ago
Thank you for making this Video, X
susanneyu 1 year ago
Like this video so other people in youtube can find it easier.
iltates 1 year ago
God Bless
gorillashop 1 year ago
My 17 yrd old neice has Juvenile Huntingtons she was diagnosed a couple of years ago......shes my star...her video is on my page xx My heart is with all the familys affected by this condition xx
TwittyWhit07 1 year ago
hi jenny, my name is celina, i'm from romania but i'm living in italy, i also i care a person with hd and she died under my eyes, it was a terible experience, i hope that i will find the corrage to go on... i wod like speak whith you, if you want you can find me on facebook, my name is celina patrasc... i don't know to write very well in inglish, i hope you understend... i sent you a big hug and many kiss... be care you self... by...
celinapatrasc 1 year ago
Comment removed
07ramo 1 year ago
going through same issues. just got tested and very scared. god bless
junior1329321 1 year ago
your so tuff jenny! i wish you every luck in the world! XD
monkey101withcheese 2 years ago
God bless you Jenny!...my daughter in law and her siblings have HD ..stay as strong as you can for as long as you can and make sure you arrange for your future care!
tonisurman 2 years ago
I love you Jenny...
nmp50122 2 years ago
Jenny, you are a brave and passionate leader. You have my vote as our next President !!!!
onegumbyguy 2 years ago
Jenny you are so brave. All the heartbreak you have endured and you are such a beautiful person. God loves you. I will keep you always in my prayers
jdemon07 2 years ago
I LOVE YOU SO MUCH!
jadee80 2 years ago