Family Stories

The Amazing Stories of our families.

The families who have children diagnosed with PMS have more in common than just having a child with a disability. The families of those affected by the syndrome have their own special needs; the need to have the emotional support of other families that are also going through the unique challenges that a rare disease poses every day. The closest connection isn’t at our child’s school, or on the next block, it could be hundreds, sometimes thousands of miles away. Despite this isolation, our PMS community has been able to form a close-knit family.

Here are few candid stories of the people effected by Phelan-McDermid Syndrome and how they struggle, cope, love, hope and carry on. Our Foundation wishes to extend its most heartfelt thanks to all those who shared opened up their lives and graciously shared their most private moments.

PMSF | Phelan-McDermid Syndrome Foundation