Story
My name is Daniel. I am a 14 year old. On the 27th of December I was admitted to A&E at the RVI with sudden excruciating back pain and within hours I was paralysed from the waist down. Later I was diagnosed with Acute Transverse Myelitis, an autoimmune neurological condition causing inflammation of the spinal cord. In my case the inflammation was extensive. This was devastating to me. I was always fit and healthy before my sudden illness. I was an athlete, a runner.
In the weeks and months ahead I underwent intensive treatment and rehabilitation. I suffered numerous setbacks including a recent relapse in May. Yet I never gave up but continued to work really hard with a brilliant multidisciplinary healthcare team on Ward 1B in the Great North Children Hospital. I have had to relearn how to walk and do things independently. From being completely bedbound and on a wheelchair (still), six months on I can now take steps with crutches and a few unaided.
During my stay in hospital , first in PICU and later in the ward, my parents took turns and never left my bed side. Their dedication to my care and the emotional and physical support they offered me were key to my improvement and the steps to recovery. They had my younger brother to support too. During my hospital stay, half of which was on a bay with other sick children I saw first hand the amazing care that caregivers (parents and occasionally grandparents) put in to support their children and the healthcare team. I noted their anguish, stress and search for answers. I noted too their poor diet and their exhaustion. For a few caregivers it was a waiting game as they saw their children count their final days. Whilst all the extra activities in the ward and the support staff target the health, recreation and wellbeing of sick children, there was little, if any to support the wellbeing and health of caregivers of sick children, particularly those in long term hospital stay. In my view improving the wellbeing of caregivers will have a positive impact on staff, children and families. I hope that the shape of these initiatives will be planned with caregivers and children too.
My plan is to start fundraising to the GNCH Foundation (Newcastle Hospitals Charity) on the 21st of June, the week of my planned to discharge from hospital and continue until the date of the Great North Run (which I planned to run) and my 15th birthday in September. I plan to celebrate the recovery I make every day by taking on average 10K steps a week until the 12th of September. I dedicate every step and every penny raised to support caregivers of sick children in GNCH.
I thank you in advance for your generous donations and support to my cause.
Thank you for choosing to support Newcastle Hospitals Charity. As the official Charity of Newcastle Hospitals, every penny raised is spent locally to improve the health and wellbeing of people in the North East and beyond. Home of the Sir Bobby Robson Foundation, Great North Children's Hospital Foundation, Charlie Bear for Cancer Care. The charity helps to make a positive difference for the patients, staff and communities of Newcastle Hospitals. To find out more about the work of the Charity visit https://charity.newcastle-hospitals.nhs.uk/