A true story about our son Ben

This is a true story about our son Ben - please watch this moving  documentary and pass on to as many people as possible. Our nephew Greg Culhane made this for a project at University and our aim is to get 
100,000 views...

We would also like this to be played to David Cameron - to highlight the  need for more funding in this rare condition.


Thank you for watching and passing on the link...