My life with Epispadias

I was born with a very rare condition called epispadias. This means my urethra didn't grow properly. Although this was diagnosed when I was born, I didn't have my first operation until I was one. I was very little and I don't remember it, but my Mum and Dad tell me I was very brave and jumping around the cot very soon after the 3 hour operation.

I have had several further operations which have put all my tubes in the right place. The worst was the "Kelly" operation which took over 5 hours and afterwards was very painful and I had to take lots of horrible medicine. I was very scared, but everyone said I was really brave. I especially didn't like the tubes called catheters which they had to put in me.

Now every day I have to do exercises to try to strengthen the muscles around the tubes so that they will become strong enough for me to hold onto my wee - to be continent. I still have to wear pads to catch some of my wee when I can't hold on. I have to change these often. I can wee much better than I used to and the doctors think it will all be fixed in the end. Some people think it is funny when I have to wear pads but it is not funny.

Kidney Kids have helped and they put us in touch with another family whose son had the same condition. Only after speaking to them did we find out that our travel expenses could be covered to Great Ormond Street. Kidney Kids have supported my Mum with trying to get treatment in Scotland as I had to travel every month for physio-type treatment (Biofeedback) to London. The machine is pretty cool - it is like a computer game and through Kidney Kids Scotland two machines are now in Scotland to use. It can tell which muscles I am using and if I use the right ones, then I can shoot asteroids in space and make monkeys collect bananas.

My Mum says she has had very little support from professionals and it has been a "piecemeal" approach to getting the right kinds of information about benefits, travel costs, special products etc. She says she has found it hard to find out who can help. Kidney Kids made a big difference.

I sometimes feel different from other children because of the pads, but I am not and it doesn't stop me doing anything that other children can all do, which is lucky!

If you have a child with Epispadias or Bladder extrophy related conditions and would like to be put in touch with another family, please give us a ring on 01324 555843.