HDSA Films presents Her Mother's Daughter
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- Опубликовано: 6 окт 2024
- In the fight against #HuntingtonsDisease, FAMILY IS EVERYTHING!
Her Mother's Daughter is a powerful #documentary of family, love and hope - across generations and against all odds.
Directed by Rae Maxwell
Produced by Huntington's Disease Society of America
What a strong grandmother, I can't imagine having all your children and grandchildren suffer from this, sounds like an absolute tragedy, I suppose she had to get strong.
This is the epitome of unconditional love, and strength that I cannot even imagine. God Bless you, grandma...
I care for my 43-year-old daughter who is in the middle stages of this disease.My husband and his family did not talk about the disease and there was no genetic test at the time I became pregnant. I cry every day when I see her. Despite that I work and strive to give some meaning to this suffering and make sure she has the best life possible.
This woman is a rock, a hero, a mountain of strength and an example of profound grace. She has more strength and wisdom in her little finger than I have ever had, period.
Yes. I would probably hang myself. We need more people like her in the world, I have no words how amazing she is.
Heartbreaking story. I worked in a nursing home back in the 1970's. One of the patients had Huntingtons. I never forgot that woman. I watched her children watch her and I could see the sadness on their faces wondering if they had inherited the disease. They were grieving for themselves and their mother. I hope and pray that one day a cure will be found.
Is there any update on this family? I can't believe what a tower of love and strength this woman is. Very, very moving.
Sadly, Alyson Marie O'Donnell passed on 4-23-2023. You can search for the obituary.
How old us she when she died@@RockinStacy
@@voltes5269 18
I ha e so much love for this family .
The Grandmother is a rockstar!
I thought I had a hard day today … I just realized that I don’t even understand what hard means. Love, respect & compassion to everyone affected by this terrible disease.
one of my best friends had this dreadful disease. I was the first one she called after the gene came back positive. Watched her decline; nursing home at 40 years old to her final death at 50. So, so sad.
This grandmother is just the most fantastic human being, to be hit with such tragedy and still manage to function as such a kind and loving person and keep smiling would be beyond most of us im sure.
I can't believe that only 327 people gave this documentary a thumbs up!
It was extremely informative, even if you didn't have Huntington's disease.
It clearly demonstrated how it can be such a destructive illness, which slowly steals your independence and robs you of your dreams.
Gob bless to all of you for taking part in this documentary, very moving but tragic but clearly only reaches those who have been diagnosed with Huntington's disease.
Not at all (re only people with HD caring about this). I don’t have HD and no one in my family does, but I’ve been intrigued about learning more about it and ALS, as I had NEVER heard of these neurodegenerative diseases before until recently when I saw someone’s story on My Last Days who had ALS. I thought ALS was the worst thing that could possibly happen to someone and then found out about HD, which they say is like having ALS, Alzheimer’s and Parkinson’s AT THE SAME TIME and I was absolutely floored. I am shocked that these diseases exist and are ruining lives like this and yet are hardly being spoken about. I think there needs to be more education on these diseases so that we can donate to help find a cure. It is absolutely appalling that people’s lives are being destroyed and fractured like this by these diseases and yet we are not learning about them at school or anywhere. I have never seen anything like this.
I totally agree we need to be more educated.
God bless
I just don’t think of giving thumbs up, just not my habit. But I wonder if some people don’t give one because it feels sort of like giving a thumbs up to this awful disease.
BTW, there’s no HD in my family, but I’ve known about it for a long time because of Woody Guthrie. I’ve learned a lot more with these videos. Such tragedy and heroism.
I think this grandma is a saint. Poor thing has so much to deal with and she’s such a beautiful and loving person. 😢 So much pain to bear. It doesn’t seem possible to withstand it.
I Know enough about myself to know that I can never do what's needed to be able help Anyone suffering through this tragic and Monstrous Disease. I was a Oncology, RN (a cancer nurse) for many years. Yet, I Know I Could NOT do what THIS woman does day in and day out. Everyone has a different set of limits. To have NO HOPE...no, I don't have that in me. The tragedy is too hard for me to understand, grasp, work through or live with. Prayer and God's Mercy for me, is the only hope there is for something so tragic.
my sister in law has Huntington's. She found out after she and my brother got married when her dad was diagnosed. She is now 58. Her symptoms are getting more apparent. My brother takes care of everything and works full-time. I offer to help.. she no longer drives and won't go on a plane now. My brother talks about it and she talks about it more, but my brother hesitates to ask for help. I cont tell him we are here for him.
Such a profound documentary. I knew about Huntington's but had no idea that it also occured in children as Juvenile Huntington's. What a tragic disease it is, truly a thief that follows generations. My heart and love go out to any and all affected in any way. Thank you for sharing your families with us. ❤❤❤
What a horrible universe that allows a child to have this hellish disease. Wishing with my whole heart for a treatment and someday a cure.
Thank God for that grandmother.
Amazing and kind Grandma.
Bless you for having the fortitude to take care of both of them. I have one child with a genetic illness and it's all I can do to get through some days by myself.
The only way to stop it is for them to stop having children naturally, as it will just go on and on for generations. So sad.
This so was important for people to know of this disease! My father in law died at 65 , my brother in law is 54 , my niece is 28 .. it is beyond comprehension to most .. the mother/ grandmother is a hero .. she is an angel .. we are caregiver’s-also ❤❤❤ god bless you and I’m so sorry
It’s in my family too , my father side , he died in 08 and 2 of my six siblings have it , people don’t know what it is , even health care workers, I’m trying to take care of my brother , he’s 65 , it’s hard
What an amazing and loving Grandma. I wish her all the Blessings and Happiness she can get.
When I was young I took care of a man in the nursing home, with this disease. In the end they had to clear a room, put thick mats on floor. He laid on those mats, and just let him kick. He was all over the room, It was so sad. My mom knew his family and had been a friend of his sister, she had died early from Huntington's.
Bless this mother and daughter.. so hard to watch. So much love, laughter and caring, so sad.
I really don’t understand why grandparents don’t have rights when their parents can’t take care of them or won’t 😢
Yeah I cannot believe this does not have more views- it deserves millions- I have not been personally affected by HD but I like to learn and share ppls journeys and it’s important to share human experiences. Cannot believe an IG makeup tutorial or making steak in a toaster has more views than something important like this.
Lots of love and blessings
What a cruel disease
This is such a horrific disease. I've seen it progress all the way to death in an acquaintance who left behind a husband and young son when she died. I'm sure this will offend many people, but why do people who know there's HD in their own or their spouse's family have children? I think to do so borders on cruelty considering how strongly genetic HD is. I mean if one parent has it, their child has a 50% chance of getting it -- not very hopeful odds, to put it mildly.
I don't think that those of us on the outside really have the right to ask this question. Having a child is such a basic emotional, animal urge in us,to give our love to an infant in our arms. People have children for many reasons. And those reasons are their own ❤️
@@LuciThomasHardylover-qx6ts Most of these documentaries they do not know because the past generations hid it. Often a grandparent did not tell the next generation. I think it is a valid question to ask when the odds are so high but now they can stop it and have healthy children. But case after case they found out it was in the family too late. Also age of onset used to be around 40 or older usually but now the cases are happening at a younger age. They found the gene; a cure will come.
The true unsung heroes 🌸🌸🌸
May god be with all those with Huntington’s Disease.
And their families.
I love the absolute rawness of this video. The strength shown is something I admire in everyone involved.
I did have a little giggle when Grandma was in the pool holding what looked like a bottle of wine. I have a distinct feeling she doesn’t drink often…but a weaker person may do anything they can to run away while she faces it with strength, honor, integrity & I’m sure a broken heart she rarely lets show.
really seead what a beautiful the grandmother is bless these peoplexxx
What an amazing woman. Much love and prayers.
sending all my love to this family.
Such beautiful relationships full of love 🧡
What a wonderful strong grandmother and mother ❤❤
I wish I could give that loverly grand a hug. Xxxxxxxxxxxxxx from Australia
I wish there’d be follow ups two or three years after.
Grandmas are the BEST ❤
How can anybody hate people who created these people? They are still Gods children and just because they suffer does not mean they do not bring immense meaning and joy into the lives of those privileged enough to know them. My husbands family is full of this disease and they have brought many people to Jesus through their childlike faith and love.
Thank you for sharing your family with us!! It's amazing, I have Huntington's Disease and COPD and Fibromyalgia pain and suffering constantly!! I live in Clearwater, FL and have a loving wife who I been with now for 8 years and knew as a good friend 8 years prior. We've been through hell and back... Lost my father of 73 to Insanity from HD and Mom passed in 4/1/2021 and I held her hand in Hospice care until she slipped away. It was heart wrenching to say the least. I made bad decisions and dated a 16 year old when I was 19 and was charged with 8 counts of sexual assault on a minor for every physical thing I did while with her for months on dates together. It was not a rape, and we never had intimate sex. I was still charged as a sex offender and also have to register for life! Hard price to pay in life for somebody like me who is already all screwed up with so many illnesses. God Bless your family.
I have Huntington
My friend had the same with a girl. He was 16 and she was 15 and her mum caught them so she lied about him. The sweetest guy I’ve ever known. Luckily he met and married a lovely lady and is fine but was terrified of girls for ten years
My great grandfather, grandmother, mother and brother all died from Huntingtons. After many years of worrying and thinking I might have passed this on to my child, I was tested. I escaped it, only to find out a few years later my Dad was diagnosed with Parkinsons. I've had fibromyalgia since age 9, osteoarthritis since age 51, and spinal problems for 40 years. I live in daily constant pain. I pray a cure comes for these neurological diseases. Huntington and Parkinsons wiped out my family. God bless all your suffering. You are in my prayers.
@@dianawalker1622 I'm so sorry!!
@Todd Thankyou, Todd. From the bottom of my heart. God bless you.
I think it should be made affordable for all people at risk of passing on HD to their children to do pre- implantation genetic testing so that their children can be sure to not get this horrible disease. Without a cure, it is the only way to stop this horrible disease.
I agree with you..but I'm also thinking if I had HD and did IVF and had a healthy baby would I want that child to see me go through that only to pass away ? I'm so torn because I know having a child is the best blessing in the world.
I would feel so guilty leaving my child mother less.
I couldn’t fathom having children if this was in my DNA
I just can’t Imagine . Children are already dealing with such delicate emotions as it is …. Then to be dealing with a terminal progressive illness that they don’t understand that will never go away and it happens so fast . God bless the children . I’m so sorry her mother didn’t get tested before having her . But as I always say …. God doesn’t make mistakes . Allison is here for a purpose . Bless all of them ❤️ we have to find a cure for This horrible disease !!!!!
I don’t think any god has much to do with this.
I would love to know how these beautiful people are doing today. Even though logically I know I don’t REALLY know them, I think of them often and wish them well.
I can't ever see this enough!! Miss you Meghan
Did Meghan pass away ?
Mothers are the best.
Yes they are. I had a kidney transplant on June 13 th 2023 and my mom stayed with me for 2 months.
i saw that she passed away on april 20th 2023, i hope she finally got peace
The daughter or grandchild?
@@lisabeaver2919I assume the mum, as Ayson ( her child) passed away in July 2023, according to another comment here. God bless this Grandmother.
Her children are at Peace, and free, at last
My son-in-law has it he is 54 it’s absolutely heartbreaking
Rip all of you ❤🙏
These guys are so young! I always saw HD as hitting people between their mid-thirties and forties. I can’t believe their symptoms are so advanced at such a young age! This is so tragic.
I hope that there will be a treatment or cure in their lifetimes. All that can be done now is genetic testing and prevention. Or IVF with eggs that do not carry the gene.
Feel for you all. So sad that there's no cure xx
Poor little sweetheart. When they said that she, at the age of 11 or 12 doesn't have any friends, I realized how lonely she must be. I always thought every little girl had a best friend.
Grandma, you are very especial, amazing, brave, dedicated kind heart! I have a question. How do you manage financially with a retirement income and have to place your daughter in a private care? Does insurance pays for this care? Is this cover by the US government? Or State of Florida? At least portion of the cost? If you need a full time care at home for your granddaughter do you need to pay yourself without any help from government? Just wondering
i can't answer for this lovely grandma, but I can provide some insight since I'm dealing with this same disease in my family. the state helps, but very little. I don't think the government is being neglectful its just that the cost of care is very expensive. That being said, you can get some at-home care, but this is only for a very small part of the day. you can put the affected person into a care home, which the government will help with as well, but the conditions are pretty sad and depressing. If you want a better level of care, you have to pay out of pocket which can easily reach $15k/mo or more. The only way to avoid having to pay crazy health bills is by paying for special care insurance...but that would have to be arranged before a formal diagnosis. It's contradictory, but insurance companies dont want to cover anyone that will need this much care. In my case, I sent my mom to mexico, where I pay for nice house and 24 hours of care.
@@secretysecret1551 I live in Mexico, still okay at 87, but know I'll have 24/7 care when I need it. We all hope to die peacefully during sleep. Not common.
It's wrong to make people suffer like this.
A friend at church told me her father is in end stages of this disease. She has not been checked for the gene because if it was positive, she would not be able to get health or life insurance. She does have long term care insurance.
its absaloutly ridicule's that we dont have some sort of program to help people with this gen who want to have kids help them pay for pre- implantation genetic testing i would think that would drastically decrease the numbers of people with this horrible disease then again im no expert, this grama is one of the strongest ppl i know she's an absolute warrior and a hero its not fair i wish her and her family nothing but the best
I don't know how I got so lucky. My grandmother had this terrible disease. My mom was her oldest child. None of her children had Huntingtons . Since my mother didn't have it I would never have it. My grandmother's brother and sisters weren't so lucky. Most of the children born to them had it. I had a 2nd cousin who got the test at a young age and discovered she was positive for the gene. She shut down and stopped living after that. I wish she would have never gotten the test!
Kathi= a super hero!
Wait a minute,they knew that THE disease was on THE family and she has a child???
She was only 19 and seems already showing signs of the disease, not everyone think about consequenses at 19 and possibly made it if her disease was starting.
She didn't want to get tested and she finally did when either she was late in pregnancy or after having her baby......I think when your that young your more scared.
Meghan seems very young for her symptoms to be this advanced. It’s in my line but they didn’t show symptoms until much later, like 30’s and 40’s.
Huntington gets progressively worse with each generation, that's why her symptoms are so pronounced, with each successive generation the faulty gene multiplies.
It is based on the CAG score
That’s still young but not that young I supose
There is juvenile HD, it’s possible
The picture will not show in the video.
This is puzzling. Why does it seem that when a parent has a 50 % chance of passing something like this down, it more often happens that the child gets it? I 've read often about this occurring.
This is NOT true. If a parent has the HD marker gene, they WILL get Huntington’s Disease. ALWAYS. It may be later in life for the parent, and possibly, for the child, symptoms could start well before age 18. As mentioned, Juvenile Huntington’s Disease.
If a child has juvenile HD, they may not live to 18, and most likely will die before having children.
I don't mean to come off as flippant, but it's probably just that they don't make documentaries about the lucky ones/families.
I’ve noticed this as well, especially when people do the pre- implantation genetic testing. In both videos I have watched now, ALL the embryos had HD. In the other video I watched, they had 10 embryos and they ALL had HD and the couple had to do a second round and out of 10 of those embryos, only 2 were HD free. It seems like it’s more than a 50/50 chance of contracting HD if one of your parents has it, it seems HD is an extremely opportunities disease and more often than not will strike the next generation if a parent has it.
HD ravages some families. My Mom died of it. She had already had 5 children and multiple grandchildren before we knew of it at all in our family. Of her 5 children, only 1 got the HD gene fortunately. It is agonizing to watch a loved one die from this terrible illness.
@@lclark715 yes, doctors were very reluctant to test, or even consider the possibility someone might have it, especially when they were "too old"...I remember our family asking repeatedly whether doctors were sure that it wasn't HD (the relative was the first known case in our family), and they told us with such confidence the relative just had dementia, and that a test would be a waste of time, and we should stop worrying...well, now it's 25 years later, and it has turned out that it IS indeed HD, and that there are several children, grandchildren and great-grandchildren possibly affected. It's heartbreaking for everybody.
The devil is definitely in the details with this beyond horrible disease. My sincere respect to all who suffer and their families.
Rest in sweet peace, Alyson.
Did she pass away?
@@lisabeaver2919 Yes…she passed in July. I like to think she entered the gates of heaven doing the chicken dance-completely unassisted-filled with joy and astonishment at her new found ability to dance with reckless abandon.
Thank you for answering..it's so sad .
😭😭
Yes but what about this incidence i heard of at a work placement where grandma had huntingtons her daughter or her son passed on gene as a carrier but he and his wife were well but there beautiful twin girls had very early stages of huntingtons , aged eight years old i think about them intermitingly id imagine the two girls are angels in heaven
Is there anyway I can contact Kathi?
grandma rocks...love her
I care for my ex, the father of my two boys. It is cruel when this disease hits such young people, at least our gene appears to hit later in life.
I think this is the epitome of selfishness. This is a PREVENTABLE condition. STOP HAVING CHILDREN IF YOU R A CARRIER. This is so unbelievably sad
Better to have lived and loved than never lived at all...
@@nannygirlkc Loved yes. Passed on a devastating Genetic condition, absolutely NO!
What an incredibly ignorant comment
I'm surprised that Allison had gotten it so young.
Her uncle had 51 repeats of the HD gene, her mom had 68 repeats, and Alyson had 80 repeats. The higher the number of repeats, the earlier the onset. I think repeats above 70 means the HD will develop in childhood. It’s so sad.
@@yesterdayitrained Hi thanks. Because I heard of someone getting it that was almost 20 yrs old. Around this age and getting it maybe you might know if there is such a big change in personality. Thanks
70 repeats. 😢😢😢
I have read something that your children have bigger risk of getting higher repeats and grandchildren even more, so often the child can get it younger than their parent.
@@teijaflink2226 Mothers are likely to pass on the same number of repeats, as far as is known right now, although there have been cases where repeats increased from a mother to her children. Fathers are more likely to pass on an increased number of repeats to their children, although of course there are exceptions to that, too.
This disease can be eradicated so easily.
Really ? How ?
@@aprilapril2 They probably meant if people know they have the gene and don’t have children if they test positive. Not a simple thing, though.
@@carolynworthington8996 I guess so
@@aprilapril2 Just came across this so thought I'd answer you...1 Get tested 2 If positive either don't have
biological children or get IVF.