CCHS is a very tough disease for children to have and live with. They really have to have more than just loving parents because its an ordeal on the parents too. It's genetic diseases like this is why I'm a big fan of free or very cheap genetic testing for parents that plan to have children so that they'll know the probability of diseases (the genes) that can be transferred to their children. Today, most don't do it because of the high costs involved or lack of education about such. Unfortunately, most of CCHS is a spontaneous disease...a genetic test will only capture low percentage of a parent with the mutated gene but higher percentage if parents have access to the genetic history of their family (grandparents, great grandparents)...especially a history of any newborn deaths in the family. wrbtrader
Im in for doing such test before having kids as well. Many people are opposite. Many people would not adopt a child either. And they are afraid of death as well. Just now as of writing thinking that there might be a correlation between those character traits. Some parents who avoid such tests, dump their kids afterwards cuz of disease. Maybe all of it fall under IQ. Oh. Whatever. But today i had a bad day & story like this made me to appreciate how lucky i am to be mostly healthy. It also keeps the ,,inner demons" at bay & by bringing the good side of personality while thinking about the help for people like this. One could even say : ,,I need them more than they need me, because they bring the best out of me" > One day <
I know a woman that stayed single into her late 30s because she didn't want to have any children...she had a blood test that discover she had the BRCA mutation in her genes that increased her probability of developing breast cancer. It was a big concern to her because it killed her mother when in her 30's and her grandmother in her 40's. Simply, she was at high risk and didn't want to pass it on to her children if she had children. Anyways, she either dated guys that didn't want to have children or dated divorce / widowers that already had children. Eventually, she married a divorce guy with 3 kids and so far...she has been lucky to not have developed breast cancer. wrbtrader