Hello my name is Alfie.
I am two and a half years old and my mummy, daddy and sisters think I’m awesome. Can I tell you why? When I was 7 months old I had my first epileptic seizure and then I had many more seizures. After lots of prodding, poking and horrible tests, the doctors at the hospital told my mummy I have a condition called Tuberous Sclerosis Complex (TSC) which causes me to have terrible seizures.
The doctors told my mummy I wouldn’t be able to do all the wonderful things that other little boys do. My mummy thought about this as she looked into my beautiful big blue eyes and whispered to me, “Together we will fight this and prove them wrong.”
The doctors are giving me horrible medicine which makes me feel very poorly and doesn’t work.
I have seizures every day and this makes my mummy and me very sad. I am fighting very hard to be just like my sisters. I can do all the things they can do when my seizures are under control, but my medicine has stopped working and I now need to have access to medical cannabis.
My mummy has been told by a doctor that even if I was having 200 seizures a day and in intensive care he would not support the use of medical cannabis.
If I don’t get the medicine I need I will keep being rushed into hospital and I will stop learning and having fun like my sisters. This is because the seizures are damaging my brain.
My little body can’t take much more and my next seizure may take me away from my mummy forever. I have become immune to the medicine the doctors are giving me. I don’t want to leave my mummy, daddy and sisters as I love them so much.
Please support me so I can carry on being awesome.