Looking for anyone who has a child with LDS or someone who knows anything about the syndrome. LDS stands for, Loyes Dietz Syndrome. Named after two doctors that discovered this. It is very rare only about 150 in the world. ( I think)
I have a 2 yr old grandson with it. I am adopting him and raising him because his mother, (my daughter ) died from this and we didn't even know.
Basically for my son it makes his Aorta grow at a rapid pace to where voluntary open heart surgeries are done and possibly mandatory ones as well. Certain parts of his body are abnormal such as; long toes, long feet, narrow head, enlarged Aorta, webbed thumbs and crooked pinky fingers.
As he grows these things could look and be more prominent. this is about all I know. I live with my husband and my son I am with him 24/7 and GOING CRAZY for some adult time . Please ..... Anyone!!!!!