My adopted daughter had symptom onset at 3, and was finally diagnosed, once she started having seizures, a few months after her fifth birthday. Her repeat count was 141. Disease progression has been rapid. She can no longer stand or walk, and has almost no comprehensible speech. Two months ago she turned six. She will probably not see seven. This disease is monstrous and it should be getting much more research support and funding than it is actually getting.
@524FrmGrl Жыл бұрын
I’m so sorry.
@connorcochran836 Жыл бұрын
@@524FrmGrl Thank you for the kind words, Amy. They help.
@user-kv1oq3kp7d Жыл бұрын
That is heartbreaking, I'm so sorry 😢
@connorcochran836 Жыл бұрын
@@user-kv1oq3kp7d Thank you for your kind words. Our daughter passed away three days ago, just six years and five months old. We miss her terribly, but death was in fact a blessing given what HD had done to her. Someday there will be real treatments and maybe even a cure, and that day can't come too soon.
@judithgibson271111 ай бұрын
How sad for everyone
@dorisjohns81242 жыл бұрын
My 26 year grandson just diagnosed. 55 repeats. My heart breaks for all those...prayers
@sanjaykumar-gs3wh Жыл бұрын
Do you have any family histor
@wheatstonebridge Жыл бұрын
Do you have it doris?
@visionvixxen9 ай бұрын
Wow, I am sending out my prayers for him today and every day protection. I want to ask the Lord’s will I want to ask for a miracle
@iSheree9 ай бұрын
Ouch. 55 repeats. So sorry. :( 1 year later, how is he doing?
@LectronCircuits7 ай бұрын
Audience wishes you & your doomed son all the best. Cheers!
@joanarafaelaferreira6716 Жыл бұрын
To everyone saying that you shouldn't have kids if you have HD, I agree. But if it happens to you like it did in my family, we only found out we had HD on my grandfathers side when everybody was already born. Back in the day it was a very taboo subject... until one of my granddads brothers got diagnosed and everybody got scared. Of couse my great grandfather also had it, but we were never told
@sylviekins Жыл бұрын
So true. It can be like a time bomb, and the testing might not have been so reliable years ago.❤
@user-ct3gl1uo7r9 ай бұрын
My niece 28 , just diagnosed. 51 repeat .. we are all heart broken
@oliviaacosta62393 жыл бұрын
I’m so sorry. I pray to God that he can help us find a cure soon
@sistersofstyle5 жыл бұрын
Jasmine, having gotten to meet you and your dad through the HD support group in Tucson, and a supporter of my family member with HD, I found this so touching, so real, and feel this documentary is so special. Thank you for sharing it publicly.
@fernemcallister67746 ай бұрын
I am so very sorry you’ve tested positive. Holding out hope there will be a treatment soon for HD.
@chupacabra3331 Жыл бұрын
My dad was diagnosed 5 years ago and this video really hits home. It’s a horrible disease. Just like the other neurodegenerative diseases, it starts taking your loved one away piece-wise. There’s no other way to describe it. It makes family members feel absolutely powerless which has compounding effects psychologically. I used to be the most upbeat, positive person but I feel like a shell of my former self. I just don’t know what to do.
@davespencer24252 жыл бұрын
What a beautiful family. I pray that a cure is just around the corner. It should be a top priority to get rid of this terrible disease.
@judithwerner5301 Жыл бұрын
Yes. I pray for cure or at least an effective treatment. It's a monster.
@amyv2838 Жыл бұрын
I'm so sorry that you tested positive. I hope the trials of pridopidine are helping people now and that (or another drug) will be able to prevent symptoms in young people who aren't symptomatic yet. With IVF, Huntington's could end within a few generations. Thanks to you and your family for sharing your stories and helping to educate the public on a disease most people have never heard of.
@echofoxtrot2.051 Жыл бұрын
100%!
@teresacatherine3811 Жыл бұрын
Jasmine, you are brave and strong. You have hope. And there will be a treatment someday. God bless you and your family. Prayers said for all of you.
@melanielifer72073 жыл бұрын
On March 15 2021 I tested positive for Huntington’s disease I am 44 years old and my cag is 45 I have swallowing problems and walking balance issues.
@denisehadfield7995 Жыл бұрын
I am so sorry x
@burrefpv92732 жыл бұрын
My thoughts are with you and your family. I tested negative. I lost my father to HD.
@kathleendowner6506 Жыл бұрын
So happy for you
@wheatstonebridge Жыл бұрын
Thank your lucky stars
@visionvixxen2 жыл бұрын
Bless you Jasmine. Praying for you and your family 🙏
@secretysecret15513 жыл бұрын
Hi, just wanted to share that you're not alone. My mom is the oldest of 9 kids, and I'm the youngest of 7 kids. With so many age groups between me and my mom, I'm seeing this disease tear apart my family as we speak. You're lucky however, to have such a supportive husband.
@reidchambers25212 жыл бұрын
Stop having kids! The disease would literally die out.
@mariaparsons7680 Жыл бұрын
I’m so so sorry. You are so brave to video while you got the results. Sending you lots of love and hugs beautiful lady ❤️💞❤️
@lynnemiller3633 Жыл бұрын
Heart breaking. Beautiful family. Praying for a cure. Praying for all who carry this gene. Thank you to this family for courageously educating us all. WE MUST HOPE FOR A CURE.
@samanthaascanio963 Жыл бұрын
This was so beautifully done. I was a SW intern in an HD clinic- you captured the devastation and the hope. I am rooting for you on this journey that I so wish was not so rough.
@justjanexxx Жыл бұрын
Omg, how heartbreaking. That was so sad to watch. I hope you’re living your best life and know we care about you ❤
@judyivie41812 жыл бұрын
Oh how sorry I feel for you wonderful family. I hope we can choke this terrible disease. Please people we need to not put more people in the tragic line of getting this monster.
@deliciaford43432 жыл бұрын
I have never heard of Huntington disease until I came across someone 19 yrs old with it. Thanks
@wheatstonebridge Жыл бұрын
Like they had symptoms at 19 years old?
@dalesansom3780 Жыл бұрын
I’m so sorry. It’s in my Fathers family but it has skipped me, for which I am very grateful. I have other things I’ve inherited from my moms side. But none as bad as that. Mrs. S.
@grunerbaum5143 Жыл бұрын
I wish you all the best, for you and your whole family. Love from Germany, Andrea
@victorialoveday9998 Жыл бұрын
I lost my husband to HD in June last summer. I pray for a cure.
@denisehadfield7995 Жыл бұрын
I am So sorry Jasmine. xx from Australia God will take care of you xx
@jenn823 Жыл бұрын
I'm sorry, sweet girl. 😞 And like you said all the wonderful things you inherited from them. That's so relevant. We carry on both these wonderful loved ones beautiful genes & the genes that hurt us all so much. 2 brothers just 11 months apart in age I met by chance as a teen & hung out w/until we were in our prime adults. They lost their dad to suicide when they were toddler's. He just wasn't feeling right but nobody knew why & they didn't remember him all that well. At about age 29- 30 one of the 2 brothers started acting funny, getting up once at a restaurant just punching another customer, landing him in jail. It just wasnt him. When he came home from jail it was observed he was symptomatic w/ chorea. Nobody knew what was going on, he kept getting arrested & accused of being drunk in public or while. Finally he was diagnosed. He eventually died & his brother & I have since veered away from our old friendship group in our 40s now & maintained friendship getting together once in awhile but considering ourselves a bit of social phobes. Lol. 2 years ago I saw him & he was fine & we had so much fun. Since then we've been texting, usually several times per week, mostly venting about life & just being each other's friend. A family member of theirs s died in August so when everyone saw him at the funeral at (now at age 44 & hadnt seen anyone much in 2 years) he was obviously visibly symptomatic of HD & rigid. 2 years ago no symptoms that I could see. He went & got tested in Oct & has seemed weirdly happier since finding out, because he's felt like something has been wrong for awhile didn't think it could be Huntingtons since the brother developed symptoms, between 28 & 30. I think he's glad he knows what's wrong now but he'll text in the middle of the night really scared sometimes. Which makes me sad. Sometimes I'll bring bailey's & his favorite cheesecake & we'll do a movie. I'm really sad about the diagnoses, especially after we lost his brother/who was my other good friend to this & him & I have stayed in touch this whole time w/my friend all through his brothers death, through it all & the years following. 2 good hearted brothers, my friends- following the same fate, same cross to bear. I watched your video in full. My advice to your pre-existingknowledge: hit that bucket list now & live it ALL up! Do everything you always wanted to do. Go everywhere you always wanted to go. We're all gonna get something. May you be blessed w/peace, good times & longstanding health! 💜
@identikid16 ай бұрын
Thankyou for sharing. Your so brave.
@Foxkitten86 Жыл бұрын
I am so very sorry. Life can be cruel.
@chamomiletea9562 Жыл бұрын
This is a heart wrenching video and very informative and well made. I am sending love and support. I hope you will keep your viewers updated on your precious life. I am telling people about this disease and hoping the research will produce a cure or good treatment soon.
@TuckerOlson134 ай бұрын
I'm sorry you and your family are dealing with this. My family is affected by autosomal dominantly inherited (familial) ALS. A lot of the same struggles and stigma.
@kibeast Жыл бұрын
Sorry for the positive results! You did a tremendous job on this film!
@katydid16002 жыл бұрын
Jasmine, I'm crying with you.
@blindsey10433 жыл бұрын
this was so sad but beautifully presented if that makes any sense God bless thanks for sharing
@vikramanand2052 Жыл бұрын
Let's all hope for a cure, or at least a treatment that meaningfully slows the progression of this horrendous disease.
@rhondacoleman630Ай бұрын
Im seeing this in July of 2024 . Im so sorry you were found positive. What i found beautiful was your husband saying its not going to change anything if your positive . We are going to grow old together either way . My hope is you two sre living every day and that you became a journalist ❤❤Perhaps even have a baby by whatever way works best .
@pam164 Жыл бұрын
So sad what a shame. Really hope they find a cure or really good treatment to stop it.
@judyivie41812 жыл бұрын
Chke this disease..many ways to have children, just don't pass on this monster.
@judyivie41812 жыл бұрын
Choke..sorry I,m riding in the car.
@JonathanHernandez-mm3nd Жыл бұрын
God bless this family.
@cathymarble32833 ай бұрын
This is called the "Devil's Disease " for a good reason. God be with all those who are affected. If anyone is interested, Chris Furbee has a story over 18 years in the making on HD. Called The Huntington's Dance
@hexhex7220 Жыл бұрын
Can't help but wonder why any loving couple would risk passing on this life/death sentence to future generations. Until a cure is found there is only one way to stop it.
@elainereaper2594 ай бұрын
People with the gene can have children via IVF where only embryos that don't have the gene will be Implanted
@lesliematteis80102 жыл бұрын
There are two diseases that I pray for a cure for. Huntington’s and Cystic Fibrosis. I’m optimistic, because there are so many bright young people in the world today.
@ninakoch17992 жыл бұрын
what about cancer :(
@lesliematteis80102 жыл бұрын
@@ninakoch1799 Many cancers can be cured. My son had stage 4 Hodgkin’s Lymphoma when he was 16. He’s now 35. He went through 3 months of chemo, which was difficult, but he survived and is very healthy now. Huntington’s Disease and Cystic Fibrosis are fatal.
@ninakoch17992 жыл бұрын
@@lesliematteis8010 okay, i see your point. i am very very glad to hear your son is okay!!💕
@lesliematteis80102 жыл бұрын
@@ninakoch1799 Thank you. I pray that soon, all cancer will be curable. There are so many medical advances made in the last 10 years. CRISPR technology is showing great promise. I saw a heartbreaking video of a beautiful, intelligent young woman, suffering from Cystic Fibrosis. She eventually had a heart/lung transplant. After one good year she succumbed to major organ rejection. I think she was in her early twenties. Heartbreaking! .
@reidchambers25212 жыл бұрын
Alzheimer's is tortuous. Your knowledge of "curing cancer" is WAY off. Your son had a very treatable cancer ( as evidenced as how short the chemo was) and will probably develop a secondary cancer from treatment.
@EmEm8722 жыл бұрын
Smiles, I wonder if you are a journalist now sharing amazing stories ❤❤
@breathlessinbedvlogs3 жыл бұрын
beautifully tragic, really appreciated your video. thank you so much for sharing your family's bravery. my granny had 42 repeats, my dad has 42 and i do not yet know my fate (neither do my two siblings) but i'm now a mom of three young kids. curious if you have any follow up, ivf? children? how are you doing now? how's your dad? i hope you are all doing as well as you can xo
@ninakoch17992 жыл бұрын
did you test ivf before having your kids?
@reidchambers25212 жыл бұрын
@@ninakoch1799 She doesn't carry a gene mutation for a tortuous, fatal disease, you moron.
@stepht75082 жыл бұрын
I don't understand if people are so afraid of getting tested why wouldn't they are least go the IVF route to spare their children the risk of HD? It would be so easy to eradicate this disease if we took precautions to not pass it to another generation.
@misskay8131 Жыл бұрын
@Steph T I think it’s due to the money aspect. Pre- implantation genetic testing for HD is extremely expensive. I think some people also don’t test due to feeling like they are interfering with nature or God, which that reason I don’t really understand, because I doubt it would be nature or God’s will for such a horrible disease to be passed on generation after generation.
@rdgloveshouse Жыл бұрын
Why would she have children after finding out
@524FrmGrl Жыл бұрын
I’m So so sorry
@ireneyoung8696 Жыл бұрын
Heartbreaking having to face that in a young life when you have already seen what it has done to other members of your family.Please pray that a cure or a good treatment is found soon 🙏🙏🙏
@nerysbaiges4682 Жыл бұрын
It is not over kiddo. You can brake the cycle. In vitro children and a surrogate to have HD free family. Good that you got tested. Prayers and Blessings. Amen.
@NickanM Жыл бұрын
In vitro is enough, no surrogate needed. Just IVF implant of screened embryos.
@brucerazor5202 Жыл бұрын
We all have our struggles , may god bless you all. Your not alone god just wants you to ask.
@ninakoch17992 жыл бұрын
beautifully done video, very touching. though i will never understand why people with HD have children without testing in ivf!!
@sidstovell21772 жыл бұрын
So you have children whose future is to take care of the HD sufferer?
@im2cuteferu2 жыл бұрын
Some probably can’t afford it, and some don’t find out until after children.
@juanitaduval98562 жыл бұрын
@@sidstovell2177 I agree and feel for these children who have to take care of a parent and the abuse and trama they go through.
@sumeleyden3350 Жыл бұрын
In my family it was not diagnosed until My mother was 69 years old. No one suspected she had it, nor my grandfather. It wasn’t her that was tested…. But my brother. The positive test in him was a bomb shell
@acooksla Жыл бұрын
This was a great documentary and I am moved by your situation. The good news is you can stop the gene from continuing by not having children the normal way. There are other options thankfully. And of course they are working hard to find a treatment. All the best to you and your future.
@sueclarke9543 жыл бұрын
So sorry
@myredpencil5 ай бұрын
The neurologist lady with the severely chapped lips was painful to watch & distracting. Thank you for shining light on the hope for genetic assistance. What a frightening diagnosis to have to face.
@dairinnally59122 ай бұрын
I'm trying to be kind, her life
@hettyspee-bw9rb Жыл бұрын
Why keep having kids
@daisysmum73367 ай бұрын
My mother had 42 repeats and became symptomatic in her late 50s and died when she was 72. My brother also had the disease but became symptomatic in his 40s. He opted for doctor assisted suicide at the age of 54. None of the rest of us 3 other kids has HD but my brother has 2 kids whose status is unknown.
@Carolyngenea9 ай бұрын
If you search online for her name, you will find an article from April 2023 in a publication called, "The Cut." Jasmine elaborates on her thoughts and plans regarding Huntington's Disease.
@zoi12steph342 жыл бұрын
My brother has his first appointment tomorrow. Im so scared.
@wheatstonebridge Жыл бұрын
What happened? If you dont mind sharing.
@reidchambers25212 жыл бұрын
Keep having kids - brilliant .
@denisehadfield7995 Жыл бұрын
Why !
@wheatstonebridge Жыл бұрын
Yeah true. People shouldnt have children if they are at risk
@truegemrn Жыл бұрын
Leave them alone.
@echofoxtrot2.051 Жыл бұрын
How about you keep your thoughts to yourself? There's this saying: If you don't have anything nice to say, then don't say anything at all. Have a good life and I hope you decide to treat people better in the future.
@elainereaper2594 ай бұрын
you insensitive creep 😡😡😡
@blackcitroenlove4 жыл бұрын
I'm curious, since they figured out how to deal with SMA via gene therapy, why not see if they have testing on for something similar? I know trinucleotide repeats are especially tricky (lost a friend of mine from childhood due to DRPLA so that's how I got interested in all this) but it might be worth a try.
@kathleendowner6506 Жыл бұрын
Darling live everyday and don't let this steal your healthy years remember you could have been negative and get hit by a bus in your thirty's we never know what is a head of us and kick the hell out of the next twenty years and have double the fun ❤️
@wheatstonebridge Жыл бұрын
Im so sorry Jasmine. This is really rough. My dad has Parkinsons.
@anitahermalin1849 Жыл бұрын
So sorry.
@annanardo2358 Жыл бұрын
Then WHY are these people pros creating more people w/ this horrible disease ????? Want a kid ? ADOPT. But to push forward having children is just keeping this death sentence alive and well.......ADOPT, there are plenty out there that were given up.
@irmasandoval8511 Жыл бұрын
My name is Irma I have a sick sister and my mother died of that my aunt uncle many members of my family I would like to know if there is something to help my sister is 46 years old
@chadwick2832 жыл бұрын
🙏🙏🙏
@sandymuddy5766 Жыл бұрын
A good friend lost his wife, son & daughter. What upsets me is...as a young couple when his wife was diagnosed with HD and told by all the medical professionals not to have children, they both ignored all the advise & had three children, the first child doesn't have HD but the other son was dead by age 19, the daughter by age 27 both dead. People listen to the professionals do not pro created! Get tested if either of your parent's have HD!!!
@mariel4085 Жыл бұрын
They didn't say the father was only 47? That can't be right...
@LectronCircuits7 ай бұрын
Huntington's Disease can happen to anybody at any time. Audience wishes hapless victims all the best. Cheers!
@mintro33 Жыл бұрын
Ever thougt of praenatal testing?
@specialist4luciek425 Жыл бұрын
One might not have but their offspring can? I mean can it skips generations?
@victorialoveday9998 Жыл бұрын
It is directly passed. It does not skip generations.
@elanamccullum167711 ай бұрын
I don't think her husband understood about having children..unless he understood they would be using a donor egg and not hers..he kind of said well decide if we will do it natural or through IVF..SO IM hoping he knows it would have to someone else's egg and not hers.
@jdmmg49048 ай бұрын
But even then... this cold will grow up with a huge burden of an ill parent. Why would a parent do that to a child knowingly?
@LovedbyYah11 ай бұрын
😢
@jdmmg49048 ай бұрын
Anyone who has it just shouldn't have kids. Not just to not pass it to the next generation but don't put your kids knowingly into a situation where they will see you ill and suffer and maybe even have to be your caretaker at a young age. Don't be selfish.
@110311DONTWANTCHANNE Жыл бұрын
even using an egg donor...if you have a baby at 30, become symptomatic around 40, the child could lose the parent around age 20, before they are independent....unless a treatment is found...
@wheatstonebridge Жыл бұрын
Yes, it is very selfish to have children (even adopted or with ivf egg donor.) Especially if you have over 40 repeats.
@mariel4085 Жыл бұрын
Easy for the husband to say...it means nothing, boo hoo life goes on, that is very cold, seems they are trying to act like this means nothing either way & that is not true.
@OsloNoWay2 ай бұрын
So why did your father decide to have two children?