Jo took a scrap book containing pictures of Mia into the reception class to show her new school friends. These included ones of her having an infusion and the equipment she needs for it. Jo also explained to the children why Mia could not do certain things that they did. This is an indication of what she said:
My name is Jo and I have come to tell you a little about my little girl Mia who is special.
Interactive session
First, can you all stand up and jump. Now stand on one leg and hop. Sit down. You can do that because you have good balance.
Eye movement demonstration
Now I want to show you something .Jo chose a volunteer pupil. Can I throw you this ball? All the children, watch the ball. Keep following it. Keep your heads still and just use your eyes. Now you can do that very well but this can be difficult for someone like Mia. Her eyes don't move as quickly as yours. This means she may not see something coming towards her as quickly as you do in the playground.
Balance
Standing on one leg to balance like you all did is difficult for Mia. She is quite wobbly on her feet. She can fall over easily. She finds jumping, skipping and standing on one leg difficult on her own. But with some help she loves to do all of these things. She has some help from adults around school so that she does not hurt herself.
It is not always easy for Mia to get up from the floor so sometimes she sits on a small chair. She will soon have a sloping desk to make it easier for her to see her work and learn to write.
Gauchers
Mia has something with a special name: Gauchers. And it makes her wobbly. She also gets a bad chest when she catches a cold and has to take lots of medicines. She has special infusions which is a mixture of a medicine that helps her keep well. We give her this through her port which is under her skin.
Having Gauchers is not like catching a cold. Gauchers is something Mia was born with but it is not her fault. Mia has to go to hospital to see doctors and nurses from time to time. How many of you have been to hospital because you needed to see a doctor or nurse?
Here are some pictures that Mia cut out and stuck in this scrap book. They are of her going to hospital in London and having her infusion at home. Some people are ill; parts of their bodies get sore and do not work properly. They are special. We have to take care of each other and look after people who are special
Questions
Jo then asked the the four year old children if they had any questions. They replied: What is Gauchers? Will she have these problems when she is grown up? My 8 month old baby brother is wobbly, does he have Gauchers? I've got a Go-kart!
Source: Gauchers News May 2005.
Copyright © Gauchers
Association 2005.