How is this being a good mom. If my son was diagnosed with this rare disorder, I would not have more children. The 25 percent chance is not worth it. I am a mother and would never put my child through such an ordeal. CHA is not like a cold that will eventually go away. This to me is not a good parenting decisoin. My only hope that this is the last child.

I had to take high doses of prednisone when I was pregnant with my boys because I had already had four miscarriages.  It turned out the miscarriages were caused by an autoimmune problem and the prednisone was to suppress the dangerous antibodies.  Reading your article brought back memories of all the side effects--the 60 lbs of water weight, the chin hairs, the bad skin, the mood swings, the big prednisone face, and yes the horrendous stretch marks (oh wait, no need to bring back memories of those, they're still here ;D)--but it also reminded me how very worth it going through that was to make sure they would be ok, and how I would do it again for them in a heartbeat.  Congratulations on being able to have your family too, Marisa. 

Hooray for you, Marisa! You never gave up hope, you did what you had to do, and you and your family can be proud of that. There are others out there that have done similar things, for whatever reason - you are their spokesperson. Sherry is a bitter woman, and could never be as courageous as you (and others) have been. I feel sorry for her and her family: what a selfish person. I applaud you! Enjoy your beautiful family!

My name is Amanda and I'm 25 yrs old. My mom married my dad knowing he had been born with Muscular Dystrophy that when they had a baby it was more likely then unlikely that I would be born with the family disability. Though my dad does walk I cannot and have been in a wheelchair my whole life. Even though other problems have popped up along the years I have a very happy, never ever boring, life. And I know without one bit of doubt that my parents would go through every single tear, birthdays, doctor visits, Barbie dolls, hospital overnighters, hospital food, high school parties, surgeries, family trips, etc over again for me or if God had bless them with another child with Muscular Dystrophy (or anything else) all over again.

While I can understand and appreciate "Sherry's" comment as a mother who would never ever want her children in any sort of pain I'm disappointed at the tone she seems to "voice." This mother went though things we will never understand mentally and physically. And, yes, CHA isn't as little as a cold and this family does and will have mountains to climb and conquer in the many years to come. Some mountains higher and steeper then others even. I can guarantee that from personal experience. What made me cringe and frown the most though were the last couple lines of her comment. Clearly that is her opinion but she seems to come from the “comfort camp”. Life is not easy.

To the "Olympic Mom" I'm happy you, in my heart and mind, did the right thing buy taking the meds even though you were obviously very uncomfortable. Your children are your 3 bright and shiny gold medals. Congratulations and I'll be keeping you and your family in my prayers. God Bless you and your family.

Amanda H. (ChickonWheels) ;-D

Sherry,

I appear to be the only one, but I do agree with your comments. I have two children that I love dearly, and would do anything for them. And, I myself actually made the decision not to have a 3rd child based on health complications my second child suffered from. As a mother, I do not understand Marisa's & her husband's decision to bring a child in to the world, knowing that their decision could mean a lifetime of suffering for that child. What is wrong with adopting a child if they truly wanted a larger family? There are so many unwanted children that are suffering in this world already; why not consider adoption as an alternative?

My father has NF1 (neurofibromatosis). Everytime my mother got pregnant she had a 50/50 chance of the baby having NF1. My older sister was born with NF1 and 22 months later so was I. My parents had my younger sister 14 months later and she does not have NF1. Back in the late 60's and early 70's they did not have the testing they do today. I am happy that my parents had all of us children. I now have 2 children, my oldest does not have NF1, but my youngest does. I cannot imagine life without him. I do not have any regrets. NF1 is not life threating and I may never had had children if it was.