Grace's Journey

I find it hard to summarize the long traumatic 6yr journey that my daughter Grace has had to endure.

Dec 2007, Grace 13yrs when first became unwell. 8 admissions over a 6yr duration treated as a psychiatric patient 2 of which were long as 12mnths, admitted and tube fed in a catatonic state. Having to learn how to walk, talk, eat, and sleep 3 times over. Despite my pleading for an MRI on pelvic area as I saw obvious physical concerns round her unusual irregular menstrual cycle that seem to be trigger these psychiatric episodes. Nevertheless, they gave a MRI but only on her brain.

Oct 2013, Grace now 18yr. I rushed her into ED with her complaining of severe headache and feeling weak and also appeared with slurred speech, confusion. She kept saying that she felt like she was dying. Mum" please don't let me die I don't want to die. In her own words to the Dr "please help me, I don't want to die.

I was horrified Dr said to take her home, my refusing to go we were sent and she was once again admitted on psych ward as a psychiatric patient. I stayed and watched her deteriorate as my girl was dying in my arms until she was near death before sending us to the planning and assessment ward is where a neurologist recognized her condition of symptoms and immediately was rushed into ICU.

Grace was seen to have a teratoma (tumour) on her ovary and was diagnosed with Autoimmune NMDA Receptor Encephalitis in Nov 2013. This seen to be a rear condition, Dr's claiming not knowing much at all. From what I've researched there's stages that this disease goes through. 2 people only have been admitted to Auckland Hospitals ICU & treated at this severe stage prior to Grace, both of which didn't make it. Grace's last words to me was she didn't want to die" so I researched & pushed for everything that could be done possible. Grace was not responding & Dr's had given up, they started talking through the process of switching off her life support.

Thankfully' having the ability to research & network worldwide we managed to keep her here and in a ward hoping for a good recovery. Today she is making slight daily improvements, waking & responsive to voice.

Grace is now in HDU and breathing on her own. She has been in hospital since this 27th of October 2013.

Thank you all for your support and contributions. We really appreciate it.