Parenting a Child with Cornelia de Lange Syndrome

Are there any other parents who have a disabled child/children? Some who might have rare syndromes like my daughters? My daughter has Cornelia de Lange syndrome, it's 1 out of 10 thousand births. She has 8 fingers total! She does have her thumbs don't worry, she game at least. /lh (light hearted) She is Gtube dependent due to have both her hard and soft palate being cleft and not big enough for getting the surgery done, she has recently gotten her hearing aids as well! What about your child/children?