A mother has spoken of her heartache at discovering her child had Rett Syndrome.

Beth Johnsson, 34, said she cannot look at pictures of her daughter Hannah from before she was diagnosed because it too painful.

She said: "We had 18 months of perfection, and then it was taken away, everyday you think about what should have been."

Hannah Johnsson's birth was the one in 15,000 effected by the neurodevelopmena disorder which is most commonly found among girls.

Youngsters experience normal growth up to six and 18 months, before losing purposeful hand movements and having problems with walking and intellectual disability.

She said: "You don't ever really stop thinking about what you have had and what you have lost. But I suppose it is better to have had perfect days than never having them. My friend once said to me that having your child diagnosed with Rett means you are basically grieving for the rest of your life."

Mrs Johnsson said it has been a constant battle, even getting Hannah into Cricket Green School in Mitcham this year proved difficult, but now she is happy and settled.

"She seems genuinely happy now, but it is difficult during the school holidays because it breaks her routine, but it means we can spend more time together as a family."

The family have been trying to increase awareness and also raise money for Rett Syndrome charities.

In July, a mass hypnosis at the Thomas Wall Centre by Harley Street Hypnotherapist John Mill, raised £1200 for RSRT UK.

Mrs Johnsson said: "John was great, I didn't know him before but he has really tried to help. We have met so many great people as a result of Hannah's illness who I wouldn't have met otherwise, so that is a positive to take out of it. I just I wish I could have met them under different circumstances."

To watch the video log on to sutton guardian.co.uk