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wishingonwind

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Hi everyone,

I'm new here and am posting because I am facing what feels like the most agonizing dilemma I've ever known. This seems like a wonderful support group and an appropriate group to turn to for feedback and thoughts from folks who may understand my dilemma (all too well, unfortunately). Sorry for the length of this message, but I want to lay it out fully for any of you who feel moved to respond.

My husband's family has a history of ALS that indicates FALS. We have one darling child who was born before we knew the implications of the disease (that my husband has a 50/50 chance of developing ALS, and that if he does carry the gene our child/ren are facing the same predicament). For a couple of years we've really, really want to have another child, and we've been trying to get pregnant again, off and on, without success yet. A few months ago, I learned the frightening implications of this disease, however, and now wonder if it's the right thing to do.

On the one hand, I'm terrified by the high likelihood that our child/ren will lose their father young, which seems to me like a serious tragedy, no matter how upbeat we try to frame it (we got to spend this time with him, we really enjoyed the time together, everyone passes, it's natural, etc.). That strikes me as an exceptionally traumatic experience for a young person to go through. AND, if our children do lose their father, then they too face the 50/50 odds of a much shorter life than average. One voice in my head says it's morally wrong to subject another human knowingly to those odds (for me-- not to morally judge anyone else), and that I might never forgive myself if I had another child now and all of this happened.

On the other hand, we love each other tremendously and have this overwhelming desire to help create another life together. We love our precious three year old more than words could ever say, and there is so much joy in our lives together. We want to expand this, build on it. We have so much love in our hearts for this potential person, and want her/him in our lives! We also think that in the forty-fifty years it would take for our child/ren to get the disease (average), a cure is not unlikely to be discovered, or better treatments anyway. So even if my husband does carry the gene, and we lose him, I have hope that it wouldn't be a sentence to early death. My husband doesn't have the same misgivings. He wants another child, thinks nothing in life is certain anyway, and doesn't dread the possibilities like I do. Most of the handful of friends I've spoken to think I should probably do it. I don't to live my life in and make my decisions out of fear. And if my husband doesn't get ALS (an nothing else gets him early), then I might never forgive myself for NOT having another child...

I don't think there's a right or wrong answer, and I'm torn both directions in a serious way. Even counseling sessions didn't get me closer to deciding. But I need to make a decision that's right for me and my family. And I need to do it quick, since I'm forty and feel like I don't have a month to wait if I decide to go through with it. I am hoping that others of you who have faced this decision, or thought about it or otherwise have insight, can post about that process and your thoughts. I would be very grateful.

Thanks so much for your support to folks struggling with this illness!
 

wishingonwind

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One more thing.

Hi again,

One more thing: we've decided not to do genetic testing, because the tests available are inconclusive for most people w/FALS (only catch about 20% of carriers, those with the SOD1 mutation). We're also concerned about what testing might mean for our insurance...

Thanks for reading!
 

wishingonwind

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Annemarie,

So sorry to hear about your situation. I hope you find some relief from the sleeplessness and anxiety you're experiencing!

In answer to your question about family history. My husband's father, grandfather, and great uncle, appear to have died from ALS, plus a great aunt with suspicious neurological disease before they knew much about ALS. We haven't gotten many details because my husband's father's family was mostly not a part of his life, and now his grandmother has dimentia and can't give us the history. We're pretty certain of the diagnosis though.

Thanks for your post!
 

brooksea

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Pretend you did not KNOW!

But, since you do, you have to decide how strong you are. Can you take care of or do you have the resources to take care of two children while your husband has ALS and then can you take care of a child or two that has/have ALS? Of course that would be worse case scenario.

Look, everyday people are faced with tragedy in their lives. Some come through better for it and some don't. Which are you? You know in your heart.

We adopted our son from a known addict, but it did not stop us. We did not know what would be in store for us after he was born, nor did we care. We just knew that we were lucky enough to have an opportunity to provide a loving home to someone that probably would never make it. He was born without complications, but had neurosurgery at 3 months, we made it through. He is now a wonderful seven year old full of life and laughter.

To make a decision based on what MIGHT happen, well we would have never adopted our son. Our lives would not be as blessed as they are now, even with ALS!

So: PRETEND YOU DID NOT KNOW...

(no offense meant jmho)
 

patricia1

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Pretending you dont know in MY opinion is selfish. ALS is not nor can it be compared to a child with a parent with drug addiction Until you walk in someones shoe with ALS you wouldnt want anyone you love to be predisposed to ALS. There are children waiting everyday to be adopted and you both sound like you will be wonderful parents. Hopefully your first child will continue to remain healty But to try for a baby Knowing he or she may end up with ALS an UNCUREABLE AND DEADLY disease would be irrisonsible. SOrry if thats not what everyone want to hear . And my God bless your child and husband and keep them free of ALS . Pat
 

brooksea

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Pat, you have completely missed my point!


Yes ALS should not be wished upon anyone. But FALS is not a certainty. Should you deny someone a life that they may find perfectly acceptable and that in the future may be able to live well beyond our scope of knowledge at this time. Sorry I offended anyone.

Hanging a decision on what Might happen would limit a lot on what this family might have in the future.

Again, sorry if I offended.

And by the way yes there are thousands of children out there waiting to be adopted, but how many are actually adopted? The ones that have problems, that come from druggies, that have emotional or physical problems? No comparison?

I gotta go get my son from school. check you later.

Please anyone else want to chime in on my response? I'd like to see the error of my ways on this.

As I stated in my first post no offense was intended.
 

wishingonwind

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Thanks everyone for responding so far. I just want to respond to to jimercat to say that you did not offend me in the least. I asked people to respond to my post if moved, and your post seemed honest and given in a spirit of helpfulness and kindness.
 

liz

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I'm glad my parents had me and that I have this life even though I got ALS at 42.

Liz
 

patricia1

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liz said:
I'm glad my parents had me and that I have this life even though I got ALS at 42.

Liz
I hear you Liz ,but me personally will not intentionally have a baby knowing that baby may grow up and get ALS. Sorry that only my opinion. Pat
 

jean

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Everyone is going to feel differently when confronted with the choice of bearing a child who might develop ALS. I know that I couldn't do it , as I would find it difficult to watch a child of mine suffering a disease like ALS and with odds of 50/50 , the chance would be too strong for me to go ahead. It is an awful position to be in and you have a very difficult decision to make. Unforunately , we can express our opinions , but you are the only person to make the final choice. Whatever you decide , I wish you all the best.
Jean
 

brooksea

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Yes jean I agree and that was what was intended in my first post. only she knows in her own heart. I've been to the children's hospital where the kids there are already quads and helpless. Yet their parents are steadfast in their care. Yes it is a heavy, heavy burden. But when you talk to the parents they light up about their child, like nothing in the world is wrong. And the children...they are happy to be there. The other parents were so supportive.

Perhaps I should not have responded as my PAL does not have FAL that we know of. I just know what I have seen with my own eyes. And what I feel for my own son. He could've been deformed, mentally retarded, going thru withdrawals I would've still taken him to my heart. He almost died at 3 months because of something the birthmother did to try to abort on her own during the pregnancy. He survived. And if he would've been damaged mentally, so be it. I would deal.

What I am trying to say is I knew beforehand that this baby could have all sorts of possible problems, because I knew about the birthmothers problems. But we chose to go for it.

Ok I keep getting interrupted. I hope I make sense on this issue.

Wishingonwind...I know I do not stand in your shoes. Look into your heart.
 

jean

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Jimercat , I admire your care , compassion and love , but being confronted with a child already born with problems is not the same as deciding to bring one into the world who you know has a 50% chance of condeming to an awful disease. i don't think I could live with the idea that I had knowingly chosen to take the chance.I also think there is the opportunity to stop a familial disease in its tracks , by choosing not to have the child. it's the hardest thing in the world to do , but if i felt it would stop future generations from getting the disease , it is a sacrifice worth making . But , as i said before , what I would do is my own choice and i know we all have different views, which is why our advice has to be limited and the final decision has to be right for the person having to make it! Wishingon wind, you have my deepest sympathy in having to make such a decision.
Jean
 

wishingonwind

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Thanks again, all, for the honest feedback and I look forward to hearing more folks weigh in on this difficult dilemma. I do want to clarify that at this point, our children only have a 25% chance of getting als, since it is unknown if my husband carries the gene. While this is still very high, I have to say it seems very different for me than 50% (e.g., I would stress more about my son if I knew his risk was 50/50 than I do now, since I can say he's three times more likely NOT to get it than get it, which helps since I'm a worrier and there's nothing I can do about it now anyway). And again, isn't very likely that a cure or effective treatments will come down the pike fairly soon? Maybe I'm just looking for justification to go ahead with this very dearly held plan that we've had for years...
 

georgia

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Might get cancer, Parkinsons, MS or something else but unless we think of letting a family tree stop because of MIGHTS go ahead and try only God knows for sure. Would you have wanted your husband not to be born because his father and grandfather had ALS?
 

Lorie

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Wishing

Did one of your husband's parents have ALS? How many people in his family have had it?

I don't really know which is worse, knowing you have a Familial History with ALS or Sporatic. My brother is Sporatic. If my brother would have had children they would have been at a 50/50 odd to. But I guess children wasn't in the plans for him. But I can tell you, I think he wishes he did. He didn't know he was going to get this disease. Like All.


Lorie
 
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