I am a mother of 4 yr old identical twin boys, both with the EXACT same chromosome disorder. RING 9.. very rare, both have had heart defects, one had open heart, both had reconstruction for cranio. and both are severely developmentally delayed in every area. They are 4 yrs old and look about 18 mnths. I'm new to this site so I'm sorry if I posted in the wrong area. thanks in advance, Brandy