My name is Sarah and my son Ryan has PRS and Stickler. He is now
five years old. Ryan has had the mandibular distraction (at 3 weeks
old) that brought his jaw out 16 mm, cleft repair, multiple sets of
tubes, hearing loss, knock knees, very high myopia and the trickiest
issues arise.

My question to anyone Stickler affected (my son's Stickler was a
spontaneous mutation caused by a previously unknown variant in the
COL2A1 gene) or with a Stickler child is about other issues that may
come up.

My son also has Sensory Integration Dysfunction. Has anyone else had
this diagnosis? Also has anyone else had other health issues that
have come about? (My son has a history of low platelets though there
has been no reason for it since he was 2.)

Also, does anyone live in Indiana???? Are there any support groups
in Indiana for Stickler?

Thank you all so much in advance.

Sarah