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My name is Beverley Williams and I am looking to raise essential funds to purchase a headstone for my daughter’s grave.
Amira fell asleep on August 12th 2024, aged 17yrs after a short stay in ICU.
After months of investigation and a very long, harrowing and draining day the coroner's official report gave the following result:
Cause and mechanism of death:
Death by natural causes contributed by the premature discharge from ICU. Cardiac Arrest and Hypoxia due to Obstructive Sleep Apnoea and residual effects of therapeutic drugs still in her system.
While this doesn't change the outcome for Amira we hope that it can help another family with the prevention of future deaths. We would like to thank the Coroner, Mr Paul Dunn, the investigating team led by Dr Alistair Gascoigne and the clinical team led by Dr Tom Payne-Doris for their thorough investigation and reflection. Although the decision to discharge was high risk and ultimately the wrong one it was made with the best of intentions. This was due to broken systems and no step down process for those with additional needs when leaving ICU, there are no individuals to blame and the care Amira recieved while in ICU was exemplary.
An article has been published this evening by the Evening Chronicle (Sam Volpe) covering the inquest with further investigation to follow into the systematic failings across education and social care within Newcastle City Council.
We will continue to advocate in Amira's name to bring about her legacy of change and ensure that no other child or young person suffers the same fate.
Amira’s life although very happy was never easy! From an early childhood diagnosis of Autism, ADHD, Learning Disability, PDA and a few other letters of the alphabet, her life got even more complicated in 2019 she was diagnosed with a rare neurological disorder (GBS) from which she was paralysed from the neck down. However, Amira fought hard and recovered many skills, she regained movement of her upper limbs but was unable to stand or walk and became a full-time wheelchair user. After a short period of illness last summer, her last fight was just too much and she passed away on 12th August 2024.
Due to a range of factors and lack of appropriate support in a school environment Amira was taken out of education aged 7yrs and had almost no assistance from the right services over the following 10 years, always falling through the cracks of the system. During this time, I stayed at home to help her as her full time (unpaid) carer and advocated on her behalf in many battles with various agencies and services.
Amira’s death was unexpected, this was never something that I had planned for. I have been utterly blindsided by the loss of my beloved daughter and left heartbroken. No parent ever thinks that they will bury their child – I previously worried about who would look after her after I was gone but this fear has now turned into how will I pay for her headstone. I now care full time for both of my parents, I am trying to build a ‘new normal’ and attempting to pull myself back together after such a devastating loss but honestly…I am really not doing well.
Amira was pure of heart and spirit and never complained. Always singing, dancing, swaying and laughing. I hope she is now somewhere over the rainbow and every time I see one, I will know she is there. I hope you all look for her too and when you see her it draws a smile at the life she lived. I was blessed to have loved her for all of her life but sad that she was only here for a small part of mine. My heart broke the day you left me Amira. I sent half of my heart with you to heaven, I will keep the other half here to watch over Tariq, until I can hold you again. Sleep Tight Angel.
In the UK many of the funeral costs for children under 18yrs old are covered or heavily discounted but this does not include headstones or memorials. I have been in touch with a range of local suppliers and the cost of a headstone ranges from £5000 upto £20,000. A headstone is more than just a marker, it’s a lasting tribute to a precious life - like any parent I would like something appropriate to mark the final resting place of my child which represents her life, how much she was loved, the lives she touched and how she will be remembered by so many people. Every child deserves a space where their memory can live on forever, and every parent should have somewhere they can visit to feel close to their.
Many people have offered help to raise funds, I have been requested to set up a trust to allow people to donate whatever they can help me get the headstone Amira deserves. If this is successful and I can cover the cost of an appropriate headstone for her grave, I have pledged to set up my own charity to help other parents who are going through the same thing and need assistance with the cost of a child’s grave – this is not a club I ever wanted to be in but if I can I would like to pay it forward to other people in the same situation with something so close to my heart. No parent should ever have to experience their child dying before them as losing a child is one of the hardest experiences any family can face but the additional financial stress and worry should not have to be a consideration too and an already awful time. Every family should be able to provide a fitting memorial to their child, no matter what their financial situation may be.
Thank you for taking the time to read this and no matter how big or small your donation I am very grateful.
Organizer
