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sara06

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I was watching television the other day, I believe it was Primetime, Medical Mysteries. They were airing a segment about Ectrodactyly, "lobster claw syndrome" There was a woman on the show named Bree Walker who has it. She used to be a news anchor and is now an actress. Unfortunately this deformity is hereditary and the people who have it have a 50% chance of having children that have it.

This woman had passed this on to her first child. When she decided to have another baby, she was ridiculed. People thought she was wrong for wanting to have another child knowing they had a 50% chance of being physically deformed.

The whole situation hit home for me. I am 14 weeks pregnant with my 2nd child. My mom passed away in October 2006 from ALS. She was the 4th person in our family and certainly not the last. Two of her 1st cousins are battling this disease right now. So, I know I have a 50 % chance of getting ALS, and I've decided not to find out. If I do carry the gene, my kids have a 50% chance as well. Am I selfish for not wanting to know, for wanting to have my family, for not letting this disease determine my destiny?

I'm not sure if it's just hormones or what, but I really started to second guess myself. When I first saw it I thought, "oh my goodness, if people think she is terrible for having children with deformed hands and feet because they may be laughed at by others, what would they think of someone who could be the carrier of a death sentence like ALS having kids?"
 

Al

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What happens if you abort the child and 9 months from now they come up with a treatment or cure? Probably unlikely but it is still possible or in your child's or your lifetime. You have to do what your heart and soul tells you. There will always be people there to second guess you and rain on your parade. Don't let them get to you Sara
AL.
 

sara06

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Thanks for that Grampal. I wouldn't consider an abortion for any reason. My issue lies with wanting to have children. Am I selfish for wanting to have them regardless of ALS?
 

Mike27

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Hi Sara,
Having children is the most un-selfish thing I can think of. You can't let the possibilty of some disease deter you from bringing a life into the world.

Is there an absolute guarantee that your child will not get ALS? Of course not. Just as there is no guarantee that our children will not get cancer, asthma or any other ailment.

I was worried about my selish motives before my kids were born as well. I had ALS before both my children were born and I remember thinking that I won't be able to play catch or roll around on the floor with them, so why would I want to be a father? Isn't it selfish of me to want children that I can't play with? What if I'm the first in a line of familial ALS? I lost more than a night's sleep worrying...
But I realized that being a parent is more than that. It's taking each challenge as it comes, loving your kids no matter what and nurturing that spirit in our kids to face whatever comes down the road with courage and perseverance.

Anyway, that's my $.02 for what it's worth.

Congrats on the coming birth of your child!

Cheers!
 

John1

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Hi Sara,

One way to look at it is that your child will probably have at least 40 years even if s/he is carrying an ALS gene. By then it seems very likely that stem cell research and possibly other approaches will have yielded an effective therapy. Of course if the Bush regime were not in office we would already be 6 years closer to a cure than we are now. But his influence is on the wane and better days are in store for future sufferers.

John
 

Al

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Just to add a bit of levity to the discussion don't forget Mike that you are talking to American's so your 2 cents is only about 1.7 cents!
Careful John isn't Arizona Bush country? They'll be kicking you back north and it's darn cold this week. No I don't think you are selfish in the least Sara.
AL.
 
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John1

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Al said:
...Careful John isn't Arizona Bush country? They'll be kicking you back north and it's darn cold this week....
I don't think they could even if they wanted to. This is Geriatric Central and most of the residents look to be in worse shape than I am :mrgreen: . On top of that they are very friendly. Sorry about the Ontario weather; gotta go out now and pick another orange.
 

CindyM

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Congrats Sara on expecting your second child. That is wonderful news so don't let those old pregnancy hormones get you second-guessing yourself! regards, Cindy
 

sara06

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Thanks to all of you. Your .02$ really is helping. One of the reasons I decided not to find out if I have the gene is because I am only 23 and I do want more children. If I did indeed know that I had that gene, I'd have a hard time having more kids, always wondering if I passed that gene on. I guess in some cases ignorance is bliss. Don't get me wrong, if they found a cure or a way to prevent it tomorrow, I'd be the first in line to be tested.
 

CindyM

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Sara- I had another thought on the "controversy" regarding whether it is "right" to have children under certain circumstances. Let's not forget that any show on TV is trying to corner viewers, first and foremost. So of course they are going to play up the controversy. You go ahead and enjoy your family. How do we know that the child you give birth to next fall won't grow up to find a cure for ALS, or become the ambassador that brings peace to the world? Regards, Cindy
 

dana

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Hi Sara,
I am 9 months prego right now with my second child. My dad has ALS, and is the first in our family to have it. The thought has crossed my mind though about what if dad is the first in our family to start the familial ALS and I too am a carrier. I have wondered about if I am passing this horrible gene/disease onto my babies. But, I am a strong believer in God and I feel that whatever our destiny holds, it is all meant to be. I am thrilled to be having another baby, as is my dad who will be a grandfather for the third time. I'm not too thrilled about going into labor though! =) I hope that you enjoy your pregnancy and the baby living inside your belly. Don't let ALS or whatever society thinks destroy this wonderful time for you.
Dana
 
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