So who is Olivia, Olivia is the daugher of russ and michelle close friends to myself and my wife Brooke. Brooke works with michelle at school.

Olivia was born on the 21st February 2001.

A healthy baby, weighing 8lb 2oz - hitting all the milestones expected with walking and talking etc.

At 3 years old, she started wearing glasses and was referred to the Sheffield Children's Hospital for regular check ups.

In late 2008, Olivia's parents noticed that Olivia was starting to suffer further loss of vision but assumed she may just need her prescription adjusting. However, during a routine appointment with her consultant, it was decided further tests were needed.

January 9th 2009 is a date that will haunt the family forever!

Olivia's consultant confirmed the devastating news that Olivia had a condition called Juvenile Batten Disease.

Juvenile Batten Disease is currently estimated to affect between 30-40 children and young people in the UK.

Progression of the disease differs from child to child but almost always follows the same pattern:

Firstly, loss of vision between ages 4-7, progressing until the child is completely blind, difficulties with concentration, short term memory and learning. From around 10 years onward, the next stage of the disease presents as epileptic seizures. During the teenage years mobility becomes more difficult and the onset of childhood dementia causes increased learning difficulties, confusion and anxiety.

Sadly, there is no current cure for the disease and the life expectancy of a child / young adult with the disease is 15 - 35.

Olivia is now 16, completely blind, on medication to control her seizures and starting to lose her mobility.

Despite this, Olivia loves dancing, is a huge Harry Potter fan and loves listening to music on her iPod, especially Westlife!