Hi, We have a son that is now 16 months old. He was diagnosed with MPPH syndrome some months back after we completed genome testing. We already knew before he was born that not everything was normal as we got indications of enlarged ventricles, large head and and extra digit during checkups.

He has global development delay, but is slowly making progress. By 16 months he is now able to sit un-assisted for short amount of time and he can army crawl to get toys that are right in front of him. It is good to see that step by step he is developing.

We are interested to get in touch with others that are on the journey with their child.