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Old 03-12-2013, 10:06 AM   #21
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Re: WWDY if your child had a life shortening genetic disorder?

Some people should never be allowed to reproduce. Those 2 women are 2 of those people. I am sorry you are dealing with this. mama.

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Old 03-12-2013, 10:17 AM   #22
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Re: WWDY if your child had a life shortening genetic disorder?

This ridiculous and hurtful. 20-30 years is a really long time.
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Old 03-12-2013, 10:27 AM   #23
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Re: WWDY if your child had a life shortening genetic disorder?

Oh wow What terrible women to say something like that to you. I pray they never have a child with a rare disorder bc I see how that child's life would be. You on the other hand, keep your head up and know you are a great mother and your child will thrive with you looking out for him. ((hugs)) to your family. I can't imagine how difficult things must be for you all right now.
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Old 03-12-2013, 10:38 AM   #24
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Re: WWDY if your child had a life shortening genetic disorder?

Quote:
Originally Posted by momgoddesswife View Post
Anyway I posted this because yesterday we were at a Mom & Tot group and I was chatting with some mom's. As normal everyone had questions about him because he's 18 months but tiny because of his being a micro preemie and his ability being that of a 7 month old. Well I mentioned his recent diagnosis after chatting with these Mom's for a while and feeling comfortable enough and the Mom's reply was why would we do treatments, and covered therapies when he's "just going to die soon anyway" she said it is selfish of us and "is taking resources away from a child who could use it and live a full life" it was a waste. Her friend agreed with her.
That just makes me sick. What a complete failure as a human being. Her and her friend.

In such a situation, I would absolutely treat it aggressively and hope for the best. 20-30 years is plenty of time for new breakthroughs to come out. And you never know if your child might be an outlier who makes it past those estimates anyway.
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Old 03-12-2013, 10:38 AM   #25
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I'm sorry mama.


But yes we would. No ones life is guaranteed! And medical advances come so far in just 10 years. Back in the 80s kids with CF weren't expected to live past 20, now they can live into their 30s and 40s.
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Old 03-12-2013, 10:47 AM   #26
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Re: WWDY if your child had a life shortening genetic disorder?

My bffs son has that. He's 25, never had many problems with it at all.. he's done blood transfusions, had a bone marrow transplant etc. He has had to have many (I am taking a guess at this part) platelet transfusions. But, he's as healthy as any other 25 yr old most of the time. I don't think he's even worried about this future...as he says "It is what it is, and i'm having a blast right now". He went through a bout of drinking, which his mom nearly killed him for, and now he's in the "Let's drive over that ramp and see if it lands flat" stage. But, his behavior is pretty typical of a young man, and one who doesn't expect a long life...it's going to be a full life.

He gets checked regularly for Lukemia, and spends more time in the doctor's than most men his age...but, he's honestly having a good life.
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Old 03-12-2013, 10:54 AM   #27
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Re: WWDY if your child had a life shortening genetic disorder?

My children may/may not have a genetic disease that does not effect their lifespan, but may affect their sight. My FIL has it, and although he has had a slow progression of the disease, he is completely blind in one eye, and has limited sight in the other. I pray everyday that the medical treatments will continue to improve and that if any of my children do have it, that there will be a cure. We are just in the beginning stages of getting my children tested for the gene.

I cannot imagine how difficult it must be for you, and your family. Those women are so rude and I cannot believe anyone would say something like that! I would not take it to heart. Any loving parent would do anything they could to help their child live a full and happy life.
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Old 03-12-2013, 10:56 AM   #28
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Re: WWDY if your child had a life shortening genetic disorder?

I can not believe they said something like that! I am hurt and angry for you.
I would do whatever I had to do to make sure that my child had a happy and fulfilling life.
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Old 03-12-2013, 10:57 AM   #29
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Re: WWDY if your child had a life shortening genetic disorder?

They obviously have never been faced with a situation where it's their baby.... I would do everything in my power to get my kid what they needed & I would never think that my child seeing a specialist or getting medical treatment was selfish or "stealing" from a healthy child.
You keep fighting the good fight for your kiddo! Nobody has the right to tell you what to do with your child or to judge you for seeking out all the medical treatment you can!
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Old 03-12-2013, 10:57 AM   #30
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Re: WWDY if your child had a life shortening genetic disorder?

I can't believe anyone (especially a parent!) would say that to a mother. As many others have said, the estimates are just that. I have a friend with a little girl who has a genetic issue that means she probably won't live past childhood. I don't think they should just "give up" the treatments that make her quality of life higher to make room for someone else. She needs them, so she should have them. I'm so sorry people can be so callous.
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