This is Amira. She is 12 years old and needs your help. Amira is severely autistic and at the very top end of the spectrum with a diagnosis of PDA, ADHD, Seperation Anxiety, severe learning disabilities, ODD and a whole host of other letters in the alphabet that means that she has been out of school for 5 years as unfortunately no provision is able to meet her complex needs. 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, 3 months ago 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 could now be permanent. Although there is now no further danger to her life things are unlikely to improve, Amira now has limited movement in her shoulders but no functional use of her arms/hands, she has no movement at all from the waist down, she is back to wearing nappies, she is being fed through a tube. Amira has gone from being a child with a severe mental disability to now also having a severe physical disability too. Due to Amira's combined conditions some of the standard equipment just isn't working for her and we need to look at her requirements for a specialist bed and other adapted apparatus to suit her needs. Some basic equipment has been provided on loan but we really need to get the right things in place permanently. We have also applied for funding for reasonable adaptations to our home too as Amira currently has no access to a bathroom but this process can take years, it is very expensive and funding is not guaranteed. We don't want to ask for help and like everyone else we never thought we would have to but we really do need your support to help us to raise the funds we need to allow us to purchase the apparatus required to ensure that Amira has the best quality of life possible, is safe, comfortable and in time as independant as she can be. Thank you.
Fundraising team (2)
Raised £280 from 18 donations
Newcastle Upon Tyne, North East England, United Kingdom