“…I’m parent of a child who has personally experienced first hand the profound impact of living with Niemann-Pick diseases & have benefited from my involvement with Niemann Pick UK.
As someone who cared for my son living with Niemann pick disease type C since February 2013, I have experience with the daily challenges faced on a day to day basis & the limitations it imposed. He was a young child who lost his ability to swallow so required a feeding tube, suffered with muscle tone & poor head control so could never walk or talk, had an enlarged spleen & liver which affected his other vital organs, childhood dementia & loss of motor skills. The impact of the whole family affected us greatly spending lots of time in hospital, intensive care & the hospice until his body could no longer fight anymore & he deteriorated eventually losing his life in 2017 aged 4.
Since I became involved with NPUK when he was diagnosed in 2013 it has made a huge difference not only to myself but my family. The charity itself provides emotional support & well being, access to services we didn’t know existed, family involvement, raising daily awareness which has led to many new diagnosis & health professional diagnostics, given myself & family members motivation to get through each day knowing we have support from each other & always something to look forward to at our annual conference meet up knowing we have support which will last a lifetime.
To top it all I have seen the difference made by the Board of Trustees, the conference programme, the volunteers, mentors, health professionals worldwide & the charity as a whole & can honestly say I would be lost without them. They have been a key part in my life & filled a significant gap to help the lives of those affected & bereaved…”