A DEVOTED mum wants to raise awareness of a disease which has affected her and her daughter for their entire lives but has only just been diagnosed.

Doctors have finally been able to tell Marianne Smith, and her daughter, Hannah, 11, they have a chromosome deletion disorder.

However, it so rare it does not have a name.

The condition means both have suffered from heart problems. Hannah had to be rushed to an operating theatre within days of her birth to correct a narrow valve. She also developed more slowly than other children and has some dysmorphic physical features which have rocked her confidence.

For years the family struggled to find out what was wrong with Hannah, but it has finally been diagnosed as a condition passed down from her mother.

Miss Smith, of Bay Tree Close, Colchester, said not knowing what was wrong had been incredibly difficult. She said: “It has been a huge battle and it is so specific and so rare it does not even have a name.

“It is the tiniest part of the third chromosome which is the problem and it is amazing something so small can do so much damage. It has been so frustrating knowing for so long something is wrong without having anything confirmed.“It was very frightening when she was first born.”

Hannah struggles at school and will not be taking SATs like the rest of her classmates at St Michael’s Primary School, in Colchester, even though she is passionate about mathematics.

Miss Smith hopes she will be able to attend a specialist school next year. She said: “Everyone there has been so helpful and tried so hard to get the help she needs. When I was at school it was not like that, everyone just thought I wasn’t very intelligent.

“I just really want everyone to know if they see somebody who does things a little bit differently, they can still do brilliant things.

“Hannah is such a little darling and lights up my life.”