Hi my name is Logan or, as my mummy calls me, Loggie bear. You can call me Loggie. I was born on the 19th of December 2003. So that makes me five years old. I was a normal happy smiling baby for the first 12 months of my life. I could walk, talk and say words like Mummy, Daddy and Chesca, that’s my big sister’s name. She loves me very much.
It was around my first birthday that I had my first seizure. Mummy and Daddy were scared, they rushed me to a big building called a hospital to see some doctors. I was in my Mummy’s arms and Mummy was telling the doctors all about the fits that I was having, but the doctors didn’t know what to do. Mummy took me to hospital many times. She told them all about the fits, but the doctors didn’t listen to what my Mummy was saying. It was only a kind physiotherapist that listened and she said that she would help.
After some time, the doctor said that I was having infantile spasms but they soon changed their mind. The doctors did some tests and said that I had ‘Myoclonic Astatic Epilepsy’. They gave me some medicine to take, to try a control my seizures, but the medicine didn’t work as I was still having lots of fits.
Then I had to go to Great Ormond Street Hospital and see more doctors and have yet more tests, which was not fun. I was scared as I did not like hospitals or having tests. The doctor told Mummy that I did not have ‘MAE’, they were now investigating for ‘SMEI’, which is ‘Sever Myclonic Epilepsy of Infancy’ and is when children have lots of seizures
I have many different types of seizure; head drops, tonic, clonic and Myclonic. Myclonic ones are not nice as my arms normally go backwards, my muscles at the front of my body contract then my body falls down. It is nearly always my head that hits the floor first which is not nice as I have hurt myself loads of times. Now I have to wear a funky hat to protect my beautiful face and head. Also, when I go out I always have oxygen with me as this helps me after I have bad seizures.
I don’t know when I am going to have a seizure; they just come without warning, sometimes 10 -70 a day. It isn’t nice for me or my family to deal with but they love me very much so they don’t really mind.
It is a lot of work for my family as they have to keep an eye out for me all the time. My sister, who is 11, looks after me as well and I love her so much. Chesca and cud cud (which is cuddles to you) are the only words I can say now as the seizures have stopped me from talking. Also, my eyes go bad and I can’t see properly. These seizures are making me do less and less. At the moment I can still eat normally and I love olives. I also have a Mickey tube in my belly for food as I don’t always eat enough, so on bad days I get fed four times a day. Also, it is the place where Mummy gives me the drugs that I have to take to help me with my seizures.
It is not fun having seizures all the time. I can walk, play and climb but not for long as this can bring on my seizures. Loads of things can bring them on; noise, people, the heat, the cold. Most things can trigger them off, not just flashing lights like they say on TV. So a lot of the time I have to sit in my wheelchair with my family pushing me around which is hard work for them all, especially in the park. I love to go to the park to smell, touch and look at all the trees and flowers.
Doctors can’t find a cure for ‘SMEI’, but they are trying. They don’t know what my future holds, they say it’s a life shortening illness, so everyday is a blessing for me and my family.
What I would like most now is to have a multi sensory padded room to be able to play in safely and without Mummy and Daddy having to watch me all the time. This room will help me to recover after I have had one of my many seizures. This costs a lot of money and my parents can’t afford it, but my good friend Erkan (who likes to feed me salami, which I also love to eat) is putting on a Grange Hill reunion to raise money for me and other children like me. It’s going to be in a club in London in October. I wish I could go to it as it will be so much fun with all you people going, but I can’t. Not only because the flashing lights would bring on a seizure, but also because I am only five, remember, so they won’t let me in.
Thanks for reading about my life and thanks for going to my night which will raise money for my room and also for children like me. Have Fun.
Love Loggie.