By Sue, Pulmonary capillary hemangiomatosis, United Kingdom, January 5, 2018
The photo is of my Daughter Jennifer Dietschmann who was 19 - (10 days from her 20th birthday ).
Jeni was well happy clever and incredibly sassy .
To all intensive purposes Jen as she liked to be called was healthy and well and had an 11 week old baby.
on the morning of the 1st February 201; her then fiancé and myself couldn't get hold of her so went to her house where we sadly found her - she was already gone and had been dead possibly 6/7 hours with her screaming baby next to her.
This was and will always be the most devastating experience of my life and although in just other 3 weeks happened seven years ago - feels like yesterday yet an eternity.
Jen had never been ill and we had no idea what had killed her . The post mortem that she had to have showed nothing and after 11 long weeks I received a call from the coroner saying he had finally got an answer for us.
He said Jeni had died from a diffuse pulmonary heamorage caused by PCH - although I am a nurse I had never heard of this and later found how rare this is - less than one in a million.
i stilll cannot believe she is gone or that she had such a horrible disease and wish there was more research - I raise awareness as much as I can- my friend ran the London Marathon , I have written a book and paint to raise funds.
Raising awareness is so important
I only wish this disease could be eradicated , it's hard not knowing why and hope that no one else has to suffer the pain of such a sudden death.