Who Am I?
Hi! My name is Alfie Evans. I am currently at Alder Hey Hospital in Liverpool in the PICU. I want to tell you about my story.
I was born in May 2016. I was born healthy and on time 😊 I grew up and fed well. I have always loved my sleep. However, when I was awake, I was always agitated. My favourite word was “Ay”, which I would often say when I was irritated. My mummy and daddy would always comfort me with their kisses and cuddles, when they saw me agitated. After a while, I wasn’t able to look at mummy and daddy for more than 20 seconds, lifting my head was not as easy anymore. I would clench my hands into a fist, have jerking movements with my arms, hands, legs and roll my eyes up. My doctor at the time said that I was being lazy and a late developer. Despite trying my absolute best, I wasn’t meeting the development milestones that other children met and I started moving backwards instead of forwards.
How my health deteriorated?
I got a chest infection which led me to have a myoclonic jerking spasm.
I was taken to hospital where my mummy and daddy were told that bronchitis, common cold, chest infection, RSV, pneumonia and two other illnesses were making me very tired. On my first night at the hospital, when being treated for these infections, I started having epileptic seizures aswell as spasms every 5-20 minutes, some of these lasted for up to an hour. ☹ These seizures and infections took such a toll on my body, I had to go on life support because of how bad they were.
I was in such a bad way that my mummy and daddy had me baptised and blessed. Doctors tried telling my mummy and daddy to turn off my life support machine but they refused at the time and I know they will continue to do so, because I am fighting! I want to get better! I am very proud of myself, as I have managed to come off the life support machine three times despite doctors thinking that it was not possible. I have managed a maximum of 13 days consecutively off the machine.
What happens next?
I am suffering from constant chronic seizures. My doctors have been unable to find a diagnosis for me.
I need your help to be able to find a diagnosis for what is making me feel unwell, so that a treatment plan can be drawn up to make me better. .
As well as medical help, I need people who can help mummy and daddy, by raising funds to be able to pay the fees of the medical experts who will be helping me. This can be done through our donation page or my shop. All the items from the shop are made by #alfiesarmy members and profits go towards my fund. If you aren’t a medical expert or are not in a position to donate, then sharing my story and talking about me with your family and friends will also help.
I love my cuddles from mummy and daddy and want the opportunity to be able to enjoy these at home by their side again one day. I will be eternally grateful for your help.
Alder Hey has applied to the courts to switch off my ventilator
My mummy, daddy and myself are very sad, that despite having a hospital in Europe that is ready to take me in, give me a tracheostomy, PEG tube for feeding and look further into diagnosing me, Alder Hey have refused to let me go. Furthermore, they have applied to the courts to take off my ventilation. Despite all my fighting and strength. They are ready to give up on me and won't let others help me.
Evidence that proves I am not in pain
This is just ONE of Alfie's medical charts, as you can see the pain score is marked down 0. We have 100's of his notes that confirm this too. Should this not be enough to show the judge Alfie is not in pain? Yes he can feel pain but we all Can? There are too many contradictions and "I think's" in the evidence that Alder Hey has put forward. Let's hope the judge sees past these doctors lies!! This is fact written in black and white. These observations are taken daily and we have hundreds that state the same. "The fact he can feel pain is a good thing, the fact he is not in pain is the best thing"