Thursday, August 6, 2015

End of HPN Awareness Week

Hi everyone

Today an article was in the local paper about our special Sam.  It has been HPN Awareness week and the PNDU has worked hard to try to educate and inform people.  As medicine advances and as time goes on, the HPN community is growing - more people are able to live a relatively normal life being supported by nutrition that goes straight into their veins. This is for a variety of reasons - a bout of illness has damaged the gut, Chrohns Disease, genetic issues (as in Sams case)etc..... but our community is still really small compared to the other awful big diseases out there.  This has its own challenges within the medical community, resources available, supportive community help aswell as living and working whilst not being able to eat.... 

I leave you with the article that came out today in our local paper, but I want to acknowledge and honour the many people that live graciously on HPN.  Many I am in email contact and unlike Sam, they hook themselves up.  This small army of individuals inspire me as a carer of a child on HPN.  I see their adult lives and the hope and joy they have in spite of their challenges and it fills me with hope for Sam and his quality of life.  We are very grateful for HPN, for without it we wouldn't have Sam.  

Enjoy the read..... but if you've been following the blog there isn't anything that you probably don't know anyway!

Botany and Ormiston Times : Botany and Ormiston Times Thursday August 6 2015, Page 0

1 comment:

Anonymous said...

Hi Shirley, did you get anymore info on the genetic cause you mentioned in an earlier blog? Cheers from Paul, Gemma, Abbie, Lewis and Jacob x x x x x