I have a severe case of NF1.

My doctor told me to have an abortion when I became pregnant because , and I quote his words , you will have a FREAK Baby.

I told him to go to H*LL.

I gave birth to a Healthy NF FREE Baby Boy.
Now 26 years old.

I am so Happy I had my son. He is a wonderfull young man.
I am so pleased he is NF FREE.

I didn't know I had NF when I had my first two children. I have 4 children, 2 who have NF, 2 who do not. I do feel guilty sometimes, but I am trying to press for a cure or at least treatment. But there are so many birth defects that are so much worse than having NF. And I think you would feel guilt if you had a child with a heart defect, or diabetes, or down's syndrome, or cerebral palsy. If you think about it, decided to have a child is always a dicey proposition at best. So many things could go wrong at any time. But that is your choice and I would never condemn you for it.

When I was pregnant with William and even when William was born I never knew anything about NF let alone know that I had it also. William was diagnosed at the age of 1 which was obviously the time when I was told I had it. When I fell pregnant with Kieran I knew there was a 50/50 chance and was offered a test to see if he had the defective gene but was told that this could bring on a miscarriage. This was never an option for me, what will be will be and you have to learn to cope with what you have been given. Hugs - Wendy

I am kind of in the same boat as you I also have NF and have all things considered my case in mildly severe. I had a pretty rough childhood growing up... I would be heart-broken if I had to put a child through even half of what I went through as a child, But more than anything I want to be a mom. There are options available though. you can do PGD... you would go through an IVF cycle and the embryos will be tested for a variety of different genetic disorders. and only the ones that are free from NF and other genetic diseases will be used. It can be costly, but to me it would be more than worth it. Other than that the only other options are adoption, or just taking your chances...

You should watch the movie Gattica. It kind of changed my mind on some of this stuff.

I have NF1, fairly mild I guess.
really only a few pea sized bumps and the lot only show up when the light hits just so...
with this being said, I had decided to still have a child and passed it down to him.
so far he really only has a lot of cafe au lait spots, enough that even the doc remarked that she rarely sees so many.
of course i would rather the spots than the bumps...
I feel some guilt, but no less than what my mom felt when I got it.
she doesn't (didn't she sadly has passed) have NF.
I wish I could just have kids as easily as the general population, but God reached down and touched me once so whatever will be will be.
I get him checked regularly, and that is all we can do.

iam 41 yrs old . i was dx with nf 1 at 5yrs old . i had cafe au lait spots till i reached my teens than the bumps started forming. my front and back is covered in them my arms and legs have some . my face and they r getting bigger. i have the ld had lots of trouble in school. 12 yrs ago i had 4 large tumors remove frm the top of my spine. than 7 yrs ago i stated having siezures and ended up getting a shunt. when i was 16/17 yrs old i was told there was a 50/50 chance of passing this on to my children i made my decision than i was not having children of my own.that was my own personal decision now after everything i have been through iam glad i made that decision. so i think ev 1 is different and we all will make the choice thats right for us. i have always wanted children and i am very sad i never had any but i know i did the right thing based on my own personal feelings.