Hello all.  We are 2 concerned parents who found out about 2 months ago the reason our 2-and-a-half year old boy is developmentally delayed, has trouble to eat solid food, wears orthotics since his feet are collapsed and cannot yet speak clear words.  He has a mutation (we like the word 'change' better) in his PTEN gene, something doctors identified just 6-8 years ago.  We are concerned since this gene 'change' has been linked to high cancer incidence; we are concerned because it is hard to get answers about something that has so recently been discovered...!

Our geneticist told us it would help to speak with other parents out there that have had similar experiences and we are sincerely hoping that this blog will become a forum for us and parents that have children with PTEN gene changes to share and learn from each other.