Hereditary Multiple Exostosis or similar condition?

Hi all, 

I'm new here and I was just wondering are there any other people who suffer from Hereditary Multiple Exostosis or similar condition?

I was diagnosed at age 5 with the condition have had multiple surgeries and had one osteosarcoma removed.

My wife and I are proud parents to our son Orion (5yrs old) and identical Twin girls Andromeda and Aurora 3yrs old next month)
We live in Preston and due to my condition I'm a stay at home dad and Rosina will be working at a university come January.

We cannot be certain if our children have HME yet as they haven't actually been able to pin point the actual condition I have the closest they can say is that it is HME related I'm currently taking part in a research project called 10,000 genomes project this is to try and pin point what I actually have cause so far they don't know all they do know is it is 'like' HME but it doesn't flag up on the usual genetic markers for HME 

We enjoy going outdoors as much as my body and pain will allow and lead as active a life as possible, we love visiting old castles and places of interest.

I am on DLA used to be on incapacity benefit but then they stopped that with universal credit.

But anywho I think I nattered on long enough lol