WHEN Mia Loudon was born she showed every sign of being a happy and healthy baby girl.

So it came as a devastating blow when, at two years old, she was diagnosed as only the 17th child in the world with CDKL5, a rare genetic disorder.

And in a further blow, doctors have confirmed that Mia's is the most severe case the three-year-old is severely mentally and physically disabled, has impaired vision, will never walk or talk, is fed through her tummy and will need adult care for the rest of her life.

The disorder became apparent when Mia suffered the first of numerous fits at only two weeks old.

Doctors diagnosed her as epileptic but when she failed to meet any of her developmental targets tests began to find out what was wrong.

A year later Mia's parents Paula and Rob, of Cinnamon Brow, were told their little girl was permanently disabled and suffering from the rare disorder, the result of a faulty gene.

Paula said: "My world fell apart when they told us that Mia would never walk or talk. I was grieving for the little girl we'd never have so when they told us what it was it was as if a weight had been lifted from my shoulders. Now we had a name for it and it wasn't anything we'd done we could just get on with things."

In three years little Mia has suffered 16,000 seizures and three operations. She has been admitted to hospital 20 times, the high dependency unit three times and intensive care once.

Yet she remains a happy little girl with a sunny disposition and smiling eyes'.

Paula adds: "You can tell she's very happy. Her eyes are always smiling at you and she never cries. She still manages a sunny disposition despite the severity of her fits, which occur about 15 times a day."

Two weeks ago Mia underwent her latest operation to reduce the size of the opening to her stomach to stop any vomit getting on to her lungs and causing chest infections.

Although the regularity of Mia's fits has become less frequent since the operation their intensity has increased. It is hoped another operation later this year will help to combat this.

l Paula and Rob are raising money for an adapted vehicle to make it easier to transport their little girl and an adapted swing. If you can help email paulaloudon@hotmail.co.uk Watch this space for news of upcoming charity events for Mia.