Tom’s Story

I am not like other boys my age. Something happened to me when I was born.

My body doesn’t work like yours. I can’t use my arms to put my hands to my mouth. My legs don’t move and I need a special chair with straps to hold my body up. I have a head rest to hold my head up so that I can see you.

My mam and dad used to spoon feed me but I got very sick a few times and had to spend lots of days in hospital because I had pneumonia. I was afraid I was going to die. My mam and dad used to cry a lot.

Now I have a Mickey Button and all the food goes into my tummy.

I don’t get spoon fed anymore. It makes me sad. I liked the taste of custard and yogurts but I was not very good at swallowing. Mam told me everything was going to be ok and that she loved me very much. Phew!

My mam spends a lot of time making sure my teeth and mouth are clean. She uses a suction toothbrush. She knows that I could end up in hospital again if I get a bacterial infection which could lead to pneumonia.

Even though I can’t walk or sit up I am able to use the toilet now.

I only wear a nappy at night time. The staff in the Centre taught me to recognise when I was on the toilet by giving me an underpants in my hand every time I sat on the seat. I wear a patch behind my ear to help me manage my secretions which has to be changed every second day.

I worry a lot. I have to have someone to help me with everything and some people don’t talk to me. They just do things for me and talk to other people nearby.

I dream that one day everyone will be able to communicate with me.

I have a special thing I use to tell you how I feel and what I want but not everyone knows how to use it. It’s called an Eye Gaze System. I dream that one day everyone will be able to communicate with me.

I go to the Sacred Heart Centre every day for 3 hours where I am with other children who also have problems and need help from all these different people to help stay strong and healthy.

Some of them are very noisy and sometimes I get scared as they run around the room and jump up on my chair. I worry the staff won’t be near me. Sometimes I think they don’t see me. I think they are on a different planet.