There will always be three major camps on this:
1. Just have a kid.
2. IVF to get a girl, who at worst will carry the gene
3. Don't reproduce.
I point this out specifically to illustrate that what is considered "ethical" is quite different from one person to the next, even at the doctor level of medicine.
You'll always have those "doing anything other than natural birth is screwing with the order of things" people, those "just IVF it to ensure a girl", and those "spare the child the possibility".
In my opinion, if you must have a child, I would suggest one of the following two options:
1. IVF to ensure a girl, so you can still have a child that is your own.
2. Adopt.
There are tons of kids who need good homes.
Some diseases are degenerative in nature and can be fought against with the right amount of determination- those are mostly muscular/connective tissue/nerve disorders, like Stephen Hawking had.
There is no amount of determination or fortitude that can cause you to reverse a lack of sweat glands, the inability to regulate body temperature, have very dry skin, sparse hair and teeth and a propensity to respiratory infections. It doesn't work that way.
Also take with a grain of salt any time a parent of a child with a disability says the kid is a blessing and calls you bitter for not wanting to pass it on. That is selfish. It's flat-out selfish. Not wanting to pass on a horrible, terrible disease is hardly being bitter, it's being conscious about what pain and discomfort you would bring upon a child simply because you demanded to have a child.
IVF for a girl, or adopt. Don't chance bringing that much pain and suffering onto your child. Demanding a baby, regardless of the risk of terrible quality of life for them, is selfish (I'm not saying that's your stance, i'm commenting on the other parents to which you've referred).
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