Moo's Mind Over Matter

I am a single mother with 2 children and have moved back in with my parents for additional support as Amira needs 24hr supervision, it was hard work but we were scraping by. However, in 2019 everything changed, Amira contracted Axonal Neuropathy Guillain-Barré Syndrome, a rare immune disorder in which the body attacks it's own nervous system, starting with a loss of sensation and movement in her feet and as it progressed over the next few weeks it worked it's way through her body until Amira was completely paralysed from the neck down, unable to swallow, difficulty breathing on her own and with intense pain throughout her body. After over 3 weeks in hospital; including a spell in PICU and the Paediatric Neurology ward under sedation with intensive treatment and a plasma infusion; due to her pre-existing conditions Amira could no longer cope in a hospital setting and has been reluctantly discharged home, although ideally she still needs full hospitalised care as well as ongoing treatment and therapies.  Due to Amira's other ASD conditions, she is unable to fully access all aspects of rehabilitation and physio, we have been advised that her natural progression has now potentially reached its limit and further recovery may now be unlikely, her current condition is now permanent.  Amira is a full time wheel chair user and will be for the rest of her life. 

Although there is now no further danger to her life things are unlikely to improve, with some very hard work and determination Amira now has regained movement in her upper body and has almost full functional use of her arms/hands, however she has no movement at all from the waist down, she is back to wearing nappies. 
Every child has the right to dignity, respect, independence, freedom and family life, nobody should be trapped in one room for a sustained period of time...please sign the and share this to help us appeal to the council to complete the adaptations she desperately needs as quickly as possible.

We are petitioning Newcastle City Council as we have now exhausted all of the normal official routes available to us to ensure that the necessary arrangements and adaptations are completed as quickly as possible to ensure that my neice and others in the same situation are able to have a decent quality of life in line with basic human rights and the current guidelines laid out by the Local Government Ombudsman and in accordance with UN Convention on the Rights of the Child. 

https://www.change.org/p/newcastle-city-council-better-access-to-home-adaptations-for-the-disabled?recruiter=34884250&utm_source=share_petition&utm_medium=facebook&utm_campaign=petition_dashboard&recruited_by_id=ca83b8a0-1725-0130-1007-3c764e044e9e