42 Repeats: A family's multigenerational battle with Huntington's disease
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- Опубліковано 4 сер 2024
- Huntington's disease is an inherited, fatal genetic disorder that causes the progressive deterioration of nerve cells in the brain. This is the story of how one family is dealing with the devastating effects of HD over three generations; A grandmother nearing the end of her life, a father in the mid stages of the disease and a daughter going through the genetic testing process.
Produced and directed by Jasmine Ann Demers
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.
I’m so sorry.
@@524FrmGrl Thank you for the kind words, Amy. They help.
That is heartbreaking, I'm so sorry 😢
@@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.
How sad for everyone
My 26 year grandson just diagnosed. 55 repeats. My heart breaks for all those...prayers
Do you have any family histor
Do you have it doris?
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
Ouch. 55 repeats. So sorry. :( 1 year later, how is he doing?
Audience wishes you & your doomed son all the best. Cheers!
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
So true. It can be like a time bomb, and the testing might not have been so reliable years ago.❤
My niece 28 , just diagnosed. 51 repeat .. we are all heart broken
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.
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.
100%!
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 ❤️💞❤️
Bless you Jasmine. Praying for you and your family 🙏
Omg, how heartbreaking. That was so sad to watch.
I hope you’re living your best life and know we care about you ❤
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.
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.
Yes. I pray for cure or at least an effective treatment. It's a monster.
I am so very sorry you’ve tested positive. Holding out hope there will be a treatment soon for HD.
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.
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.
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.
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.
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.
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.
Stop having kids! The disease would literally die out.
I’m so sorry. I pray to God that he can help us find a cure soon
I wish you all the best, for you and your whole family. Love from Germany, Andrea
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! 💜
My thoughts are with you and your family.
I tested negative. I lost my father to HD.
So happy for you
Thank your lucky stars
Thankyou for sharing. Your so brave.
I am So sorry Jasmine. xx from Australia God will take care of you xx
I have never heard of Huntington disease until I came across someone 19 yrs old with it. Thanks
Like they had symptoms at 19 years old?
this was so sad but beautifully presented if that makes any sense God bless thanks for sharing
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.
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.
I am so very sorry. Life can be cruel.
Sorry for the positive results! You did a tremendous job on this film!
Smiles, I wonder if you are a journalist now sharing amazing stories ❤❤
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.
I am so sorry x
I lost my husband to HD in June last summer. I pray for a cure.
Let's all hope for a cure, or at least a treatment that meaningfully slows the progression of this horrendous disease.
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 .
So sad what a shame. Really hope they find a cure or really good treatment to stop it.
Jasmine, I'm crying with you.
I’m
So so sorry
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 🙏🙏🙏
Chke this disease..many ways to have children, just don't pass on this monster.
Choke..sorry I,m riding in the car.
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
So sorry
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
did you test ivf before having your kids?
@@ninakoch1799 She doesn't carry a gene mutation for a tortuous, fatal disease, you moron.
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.
@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.
Why would she have children after finding out
God bless this family.
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.
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.
In vitro is enough, no surrogate needed. Just IVF implant of screened embryos.
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.
Im so sorry Jasmine. This is really rough. My dad has Parkinsons.
beautifully done video, very touching. though i will never understand why people with HD have children without testing in ivf!!
So you have children whose future is to take care of the HD sufferer?
Some probably can’t afford it, and some don’t find out until after children.
@@sidstovell2177 I agree and feel for these children who have to take care of a parent and the abuse and trama they go through.
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
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.
what about cancer :(
@@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.
@@lesliematteis8010 okay, i see your point. i am very very glad to hear your son is okay!!💕
@@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!
.
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.
So sorry.
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.
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.
People with the gene can have children via IVF where only embryos that don't have the gene will be Implanted
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.
🙏🙏🙏
Why keep having kids
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
We all have our struggles , may god bless you all.
Your not alone god just wants you to ask.
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.
I'm trying to be kind, her life
My brother has his first appointment tomorrow. Im so scared.
What happened? If you dont mind sharing.
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 ❤️
Ever thougt of praenatal testing?
They didn't say the father was only 47? That can't be right...
😢
One might not have but their offspring can? I mean can it skips generations?
It is directly passed. It does not skip generations.
Keep having kids - brilliant .
Why !
Yeah true. People shouldnt have children if they are at risk
Leave them alone.
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.
you insensitive creep 😡😡😡
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!!!
So why did your father decide to have two children?
Huntington's Disease can happen to anybody at any time. Audience wishes hapless victims all the best. Cheers!
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.
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?
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.
Q
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...
Yes, it is very selfish to have children (even adopted or with ivf egg donor.) Especially if you have over 40 repeats.
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.
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.