Learning To Live With Rts

my two children have been diagnosed with rothmund thomson syndrome jan.20/10.i am looking to find others dealing with this in their lives,and hear how they cope and what challenges they face.it is hard to find anyone who understands how scarey this is.i have already lost achild to abrain tumor,and am scared what will come with my children.

rts2 rts2
26-30, F
Feb 12, 2010