It can be very hard to network about rare things when limiting yourself further by frum. And even if you do find one person, it'll just be 1 other perspective. The feeling of being in the virtual company of a bunch of moms who know exactly what you are going through emotionally, physically, medically etc is unparalleled. Just my 2 cents.
From the data I just read maybe 300 children are born with this syndrome every year. That really lowers her odds of finding frum parents.