Hi,

I got the result from my cvs today. The child in my body has the gene. The doctor didn't say how many counts, just somewhere between 36-39. My husband is the carrier with a count of 37.
Before the result I could not imagine how difficult this could be. I did agree with my husband to have an abortion in case it would be a negative but I really can't.. .I keep crying while writing this but I really want to have my child.. They showed me how it moved around in my belly when they were taking the CVS and I realized I really loved it.

I have been reading a lot about HD but how about all of you living with the disease at different stages, if you could choose, if you were in my childs position, would you have chosen not to be born?
My husband says he would choose not to have been born. Not so much for his own sake as for mine and his family's. He saw how his father destroyed everyone's life around him and he hates that he will do the same to us.
Is this true? is it really better not to be born than having perhaps up to 30-40 good years?

Greatful for any insight.

I don't have the gene so I hope it is okay to comment. Lorrie, if you want to have this child, have this child. It's a reduced penetrance range so that means that the child may never get the illness. And I honestly believe treatments are on the way. I have been disappointed at how long they are taking, but I do believe that they are coming in the next few years and even if your child is going to get the illness it will be many years in the future. The thought of aborting this child is breaking your heart and that is why abortion doesn't sound right to me.

Hi

I have the gene with 43 repeats, I am 34 in a couple of months and I don't have symptoms. I would definitely choose to be born and live for 50 years than never live at all.

Marsha is right, lots of treatments are on the way and there are many natural products that people already take, see wills posts for details.

Please have this child and love it with all your heart.

Hope this helps

I am with Marsha - if you want to have the baby have the baby - if you abort now with those thoughts you will forever regret your action.
Taking it further - if your husband would have been aborted you wouldn't have him in your life. The baby is moving - this is an actual
little human being you are carrying.
I also agree treatments are coming just not as soon as we want them.
My husband has had HD probably for at least 20 years that we know of. I actually asked him the question about whether he is glad he
was born or would rather not have been - I asked him this about a year ago. He said he is GLAD he was born.
He has HD but it doesn't define him. We have had a lot of good times and we just adjust as we go along.

Your husband and baby are in the Grey area of cag counts, and your husband and child could be fortunate with this cag count, to not show symptoms until a very very old age. I am in my mid 50's, and have been in Very early stage for almost 10 years now. I absolutely love my life, and I learned to love my life with hd too. It is also possible that his father could have had a higher count, which would have made his symptoms worse, and it is possible for a lower count to be passed down. I think your husband and child are actually very fortunate to have the count that they have...does your husband know his count? I also think historically that this couldn't be a better time to have an hd child, especially with such a low count, because science and research right now is going in leaps and bounds. Maybe have your husband read some of these posts, to help the two of you have a discussion about this. No matter what you decide, we will support you, I just hope you and your husband can come to the same conclusion, whatever that is, together. Good luck with this very difficult news, and let us know how you are doing

I am an at-risk child...almost 39 years old, while I can't answer specifically to your question because I do not know if I'm positive or not, I too have pondered this question. Yes, even at-risk I'm thankful for life!!!! I know this world isn't my home. I'm blessed with the life I have..my wonderful husband and children. As others have mentioned, it's a low CAG. Please have your precious baby...and allow your child to experience life. Prayers and blessings to you!

Thank you all for your kind words and advice's,

Me and my husband cried our eyes out last night trying to make a decision. He is very against having an HD child. He has experienced a horrible childhood with an very abusive and aggressive HD father and spent his own childhood wondering if he will also be broken down the same way. He made a promise he would not ever have children at risk of getting this condition.
And I agreed with him on this, I agreed we would abort a sick child, but that was before.. before I had all these feelings.

We have another child which we also tested but he did not have hd so I never had to deal with this questions before.
My husband said something I can't forget - "When the day comes that our children will ask you if they will get the same horrible disease as they see their father suffer from, will you have the heart to tell our first child "No dear, not you" and our second "yes dear, you do"
No, I can't do that... But I don't want to kill my child either.. I honestly don't know what I will do right now..

I can not comment on whether you should have your child - but I know that when J was diagnosied with HD at 43yr - CAG 46 (only last month) - we sat with his mum and dad last night - who are been tested for HD (no results yet . J and I dont have children, have never wanted children so was not an issue

His mum said last night 'my son - I would not be without him'.

That broke my heart, the reality is she may very well be..and she knows that - -but Js here right now hes living and breathing - a man of 43yrs old, who has had good jobs, has 2 dogs, girlfriends - more that a few, houses - bought and rented ,friends , holidays, hes an uncle 5 times over, hes a brother, a son, a grand son, hes been and is a good work colleague, hes kind, handsome, sincere, funny (thou not as much as me), hes honest (wont do the dishes right! - but hell deny that!) - hes my J - hes lots of things...................................

I tell him all that and that is the truth - Js parents never had the choice - or the horrible decision (if that is even the right word) you have or feel you are now to make = I just know J is here and has had a life - and has a life.............however that life will now be!



Edited 2 time(s). Last edit at 07/10/2014 09:32AM by Dece.

Lorrie, do you happen to know your FIL's CAG count? I am wondering if it contracted when the gene was transmitted to your husband. Also, did your father in law experience any head injuries before he got sick? Did he take medication during the period in which he was abusive?

Lorrie, I am sorry to hear your dilemma. I believe that Marsha is giving you very good advice here. All the best to you. We only live life once and whether you live to be 15, 30, 50, or 80 years old... it is a "lifetime". I would assume no one alive would say that they would choose to not be alive for the moments in which they feel "alive", for however long that feeling and mindset can exist.

I too feel that a cure is finally getting closer for the next generation. For now, day to day, life is indeed precious. Good luck to you. Ty



Marsha Wrote:
-------------------------------------------------------
> I don't have the gene so I hope it is okay to
> comment. Lorrie, if you want to have this child,
> have this child. It's a reduced penetrance range
> so that means that the child may never get the
> illness. And I honestly believe treatments are
> on the way. I have been disappointed at how long
> they are taking, but I do believe that they are
> coming in the next few years and even if your
> child is going to get the illness it will be many
> years in the future. The thought of aborting this
> child is breaking your heart and that is why
> abortion doesn't sound right to me.



Edited 1 time(s). Last edit at 07/10/2014 10:15AM by TylerFitz.

Lorrie,

None of us "know" what we will get in this life..........many have genetic markers for heart disease, diabetes, alzheimers, cyctic fibrosis, etc. When my HD daughter became pregnant 4 years ago with her 4th (we didn't know she was Phd at the time) she wanted to abort because she was so overwhelmed with her 3 very active boys. Her husband was completely against an abortion, and as we sat in the parking lot across from where the procedure was to take place, I told her that maybe this one would be her "girl" she wanted.........she agreed and decided to have the child who happened to be a girl!! She was born on Valentine's Day and is the most beautiful child I have ever seen (no bias, really ) and fun, smart, awesome to be around.........now, we don't KNOW if she is HD positive, but I do know this........she is a beautiful little soul and her life lights up so many around her. I could not imagine her never coming into our lives.

It is a hard decision for you, so please pray about it. I wish you the best outcome for you and your husband.

Lorrie, I'm a person who usually advises against having children, if the father has a positive cag count. Because fathers can quite often pass on a high cag count, meaning juvenile hd. You are in fact the first person that I have encouraged with hope. The difference is, when your child asks, your answer would not be yes you will get it, because it's in the grey area, you can say yes, you may get it, but probably not until a very very old age. And yes, Marsha's question is very good. If his father had a higher cag count, or head injury, any of those could have made his hd much much worse than what your husband may get. His father quite likely had something else going on to make his hd so bad at an early age, because even your husband may not get hd until his 90's. My dad's cag count was 39, and he didn't become symptomatic until he was 75, and passed away at 79, my dad's hd went very slowly until the last few months. And do you know your husbands cag count? I think it's important for him to know all of these thoughts, to help with your difficult decision.

PS And I totally understand your husbands question, how do we tell one you wont get it, and the other you will. That would be horrible. BUT, because you are in the unusual position of the cag being in the grey area, this makes a huge difference as to how you would answer your child. I did at one time ABSOLUTELY read on here one day, of a parent that had a count of 42, but passed down a smaller grey count area to their child. Soooo, possibly his father had a higher count, and that would Definitely explain his hd being very bad, along with possible head injury, etc.



Edited 1 time(s). Last edit at 07/10/2014 03:42PM by Barb.

I understand you must be having a very though decission. I can only imagine.

But have this is mind: HD is not only negative. I am at risk of HD and currently not showing any signs at age 20. To me being at risk of HD is a huge motivation.

Let's face reality: I dont know my future. I might never become that proud dad watching his kids grow up.

But what I do know is that I am going to live tomorrow. And I know that tomorrow is going to be the best day of my life yet to come. So I live the moment 100%. I laugh with my friends. I hug my girlfriend. I love my friends and family more than you can imagine.

Having this attitude about life is a very rare and precious gift! It has increased my quality of life a lot. And I got it because of HD.

Hugs from the runningmachine

Runningforlife -

What an awesome attitude to have - we should all have that attitude whether or not we are at risk for HD or anything else!

Lorrie, I only read a couple of the post so please consider that in my reply.

You are ultimately the one person who can make the decision to have this child. I am not pressuring either way. You are the only one who can make the decision.

In answer to your question, yes, I would have chosen to be born. In 57 years I have met a great many people. Overcome a great many hardships that have made me stronger and closer to God. I have a hardship now if that's how you want to look at it. I choose not to. It's an inconvenience. I worry every day if some little jerk is my HD escalating. Most of the time it's not.

By being born, I may have passed the gene to my children. I do not know. My oldest and his wife chose to have a child regardless. If they had not I would not have been able to spend two weeks in June with him and change the first dirty diaper in almost 26 years. He is just over two months old today.

I did take time to look at Adam and ask myself about HD and his future. My crystal ball tells me he (perhaps myself) will see treatment.

I worry about my children having the disease. I don't lose a lot of sleep over it because it is actually out of my hands. I never knew about HD. I have spoken to people with it in their families and yes, it took it's toll. Nothing is going to be easy.

CAG counts and symptoms vary greatly. I have a 36. I was one of the unfortunates who had a head injury and if not for that incidence would have never known what HD was. In a way, I'm sort of glad because I have met a lot of fantastic people here. Caregivers, PHD's not to mention Marsha who "has" a PHD (please forgive the pun). If you read everything I have it all seems to say the same thing. "They" , don't emphasize the in between which is where I have found many to be.

Keep in mind not everyone has the ability to have children. My current, second and last wife is one of those people. She would have been a great Mother given the opportunity. Now she gets to look forward to taking care of me.....lol.....

Keep asking questions and I hope you can come to a decision you can carry with you in the future. Try to lighten up on the decision process, it has to be overwhelming in itself.

I make no stand here for or against abortion. Please keep that in mind.

Thoughts and prayers,

Mike



Edited 1 time(s). Last edit at 07/14/2014 10AM by mikee.