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[anonymous]

I am a Master's Student at the Graduate School of Journalism at Columbia University. I lost 2 siblings to a rare genetic disease called Canavans. My mother did not know either one was sick when she was pregnant. I decided to write my Master's Project on Cystic Fibrosis since it is the most common of the genetic diseases in the United States and I was hoping someone could help me understand what is it like to have a child with the disease. I wanted to focus on the decision a parent has to make when finding out their child is sick, either before the child is born or after. I can be reached at fib2101@columbia.eduI know it is a difficult topic but I also know how incrediblly strong it makes people after watching my mother go through it.Thank youFelissa

 

[anonymous]

Felissa, For me personally there was no decision to make after her diagnosis at 8 weeks old. She was our daughter just as your siblings were children to your mother. If you would like to get a good feel for the emotions of a parent with CF you should read the book entitled In The Shadow Of Illness by Myra Bluebond-Langner. It is a chronicle of 9 families affected by the disease (parents, patient and siblings) at different stages of the disease. There is another book called the Social Aspects of Cystic Fibrosis (unsure of title name and other) which looks interesting.Good luck and thank you for taking the time to try and understand, and maybe in turn raise awareness for our children.Mother to Ashley (3 1/2 yrs. old)Canada