My name is Georgia-Louise and for 9 ½ years now I have grown up with a younger brother who has a CMN, his is situated mostly on his back. During that time we have had a few ups and downs like most kids but generally I have put up with him. As he has grown up we have had the usual arguing you expect from a boy as well as the “long discussions” we have about his back.
A few years ago we had a special garden room built so that my brother can play outside-but-inside (if you get what I mean). This took a couple of months to build and my brother was very into helping the builder to complete it but I think he was very sad when the work finished-he enjoyed it too much!
Inside the garden room we have a ping-pong table, a football table and what is to be our trampoline next year. He spends as much time as he can outside in the sunshine, often “forgetting” to wear his hat or put sunscreen on, so we have to keep an eye on him a lot of the time.
In the Christmas holidays 2003 and September 2006 we went on holiday to a villa in Spain. We spent as much of the time swimming early in the morning and early evening and at the beach in the evening. He had as much, or even more fun, as I did. He enjoyed those holidays like a normal boy and sets an example for other CMN diagnosed children.
He has had to put up with some bullying at school, which I used to help him with when I was at the same school, but I am at Senior School now and even though he is now in year 5, the same children still bully him. He talks to me about it when we are at home together and I try to help him with it. He had some counselling at GOSH to help him with it but that ended when the Psychologist moved to another hospital.
It is not easy for him, but mum and I help him as much as we can. He is a very happy, annoying little brother, who loves Pokémon and irritating me!!