Thanks Missy for your response. I wish I could help other parents sharing my experiences. I sometimes feel alone but try to be positive since I can reach out to professionals and doctors on this site for support. I guess I wanted to hear more from families who can tell me how their lifestyle is? history of their kids condition? how they coped? ect.. I'm almost tempted to create a blog for my kids...that way I can periodically attach the link to this website??? I know If I were a parent seeking support, I would gladly read on others life experience with LM.
Please feel free to pass on my email contact to those you feel can help.