schazwan-jumple syndrome,needed help..

hello friends i m dealing with 2 girls both r sisters,one 5 years old 2nd one and half year old .both born with multiple congenital contractures epecially both knees r stiff with very little bending of 30-40 dregrees in older one 10 degrees in younger one.also marked thoracic kyphosis.both diagnosed as S-J syndrome.this is 1st time m dealing with this type of syndrome.can any1 put more light on it.does massage work?what's role of surgery and botox.kindly guide and share u r experiences...