Blog

Through the Rare Project we introduce you to the people behind their rare conditions.

Oliver

Oliver is a very sociable little boy who loves hugs and he is always trying to hug everybody he sees when we are out, especially other children.  He also has a tendency to grab or pinch other children.  This can be a little problematic as most children shy away from this and are scared of him. Adults, on the other hand, love him to bits.

Oliver is nearly four years old and isn’t able to talk although he is starting to use Makaton signs to get his needs met. He is very small for his age, about the same height as his 18 month old brother, and is often asked whether his brother is his twin.

His favourite activity is reading books and playing ball, he is supported by a one-to-one at his local pre-school and is way behind his peers in all areas of his development. He is seen as ‘the baby’ by his friends.

Oliver has a rare micro-deletion of chromosome 7, the condition does not have a name but the code is 7p22.1. There are only 25 other people on the genetic database with this same micro-deletion so very little is known about the condition.

There is an assumption that kids can do certain things by a certain age and we constantly feel that we have to justify Oliver’s behaviour and explain to people why he can’t communicate. It would be great if people were more accepting of children who behave differently which is why we were really happy to take part in the Rare Project.

The aim of the Rare Project is to highlight just how many different conditions there are out there and they affect people differently. 

You can meet more people who are taking part in the rare project by clicking here.