Last post Fri, May 02 2008 5:28 PM by Vinny. 3 replies.
I am looking for people that have recently been diagnosed with this syndrome. Let's just talk about our feelings and what we are going through. Even if you have children that have been diagnosed or other family members. Tired of all the medical mumbo jumbo?
Got to admit, I've never heard of it.
Hey Tridog! It's a connective tissue disorder. Have you ever heard of Marfans by any chance? It's like that sort of. Anyway, the main concern for people is anuerysms. But they can have problems with certain organs. The heart, bones, palate, they also usually have different physical characteristics. My son has had surgery on his stomach twice. Will have cleft palate repair. He has many other problems, including a devleopmental delay. Anyway, thank you for you reply. I look forward to getting to know you. I have read some of your replies to other people and you seem like someone who just enjoys life for what it is. (Correct me if I am wrong) You konw, I have 6 other children without any diabilities and sometimes people say to me, oh how devastating! How are you dealing with the things going on with your baby? I guess I never looked at it like that. We have struggled, but most of all I have just enjoyed getting to know him and take care of him in the way that he needs me to. Have a great day.
Hello specialcaremama,
Welcome to Disaboom-Thanks for sharing your son's story. God Bless you and your family.
Stay Strong
Vinny
