HDSA Films presents Her Mother's Daughter 

Yes. I would probably hang myself. We need more people like her in the world, I have no words how amazing she is.

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.

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

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

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 ❤️

And their families.

I don’t think any god has much to do with this.

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.

Did Meghan pass away ?

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.

Yes they are. I had a kidney transplant on June 13 th 2023 and my mom stayed with me for 2 months.

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

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

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.

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.

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.

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 .

grandma rocks...love her

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.

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.

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