If you or someone close in your family had a debilitating genetic disorder... - Page 3

[newmommy7-08]

Yes I would.

My DH's best friend passed on 4 years ago after a long battle w/ Duchene's Muscular Dystrophy. His mother opted to not have any more children after it was found that she was the carrier. Duchene's is deadly, no two ways about it. DH's best friend was an INCREDIBLE person, who amazingly lived until one month before his 26th birthday. He lived the life he had and didn't think about the end, except on the rare dark day. He was incredibly positive, funny and sweet. That was his life, and he strove to make it the best possible life he could.

When DH and I went for our fertility treatments and they asked us if we wanted the genetic testing and we both said no. Nothing we would learn would change our desire to have the child it was meant for us to have.

[bri276]

Originally Posted by lolar2

First of all, I think that poster was categorizing based on likelihood of passing along the condition, rather than relative desirability or undesirability of the conditions.

Second of all, which is disturbing-- is it insulting to people with mental retardation, or is it insulting to people with spina bifida or MS? I can see either way.

Maybe you're right about the categorizing part. I reread carefully and I can see that.

Regarding what I found disturbing, if in fact it was meant the way I originally took it, is that someone would equate "mental retardation" with a severe, painful physical disorder. With the understanding I have about the way testing is done for MR, and the fact that I'm supportive of neurodiversity, I just don't view MR as a death knell. In fact, it means little to nothing to me to say someone is MR. Based on which tests? What can that person do? Some autistic people, for example, will test severely MR, but when they're given the chance to communicate in a way that works for them, the results are very different. Same with a child like mine- if I hadn't bothered to teach her sign language, we (me, my husband, the doctors and therapists) would be thinking she's much more cognitively disabled than she is. She's too young for a MR dx, but I wouldn't care if someone said she was- I know perfectly well there is a lot that goes on in her brain that won't show up on standardized testing.

All I'm saying is that if someone looks at a condition that causes a huge amount of physical pain, requires very involved medical care, will affect the individual for a lifetime and/or be fatal, I just can't see putting that into the same category as MR. But it's also important to note MR can mean everything from someone who can graduate high school with help and live on their own, to someone who will function at the level of a newborn their entire lives, and so I think the term is too broad to use in a general way.

[lasciate]

No.

[NYCVeg]

I think it depends on the condition.

I am a carrier for Tay-Sachs, which is a horrific disease, with a 100% mortality rate before age 5. Children who have the disease suffer tremendously in their short lives. If dh had been a carrier as well, we would have had a 25% chance of a T-S baby--and we would not have had biological children in those circumstances. The odds were too high and the disease too devastating.