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Page last updated at 13:41 GMT, Monday, 9 August 2010 14:41 UK
Huncoat toddler Tess Sullivan's rare Alexander Disease

Alexander Disease is thought to affect just 50 youngsters across the world

A toddler from Huncoat is suffering from a rare terminal condition believed to affect just 50 youngsters across the world.

Tess Sullivan has been diagnosed with Alexander Disease, a rare genetic degenerative brain disorder.

And she is expected to die between the age of five and ten-years-old as there is currently no cure for the disease.

Her family say they are determined to make her remaining years as happy as possible.

Three-year-old Tess was born in Royal Blackburn Hospital with no health issues, but after a series of problems - including epileptic fits and slow development - was diagnosed with the fatal disease in December last year.

Alexander Disease
Rare genetic disorder affecting the central nervous system
There are three types of Alexander disease; infantile, juvenile and adult
The infantile form usually starts at the age of six months or within the first two years
Juvenile form usually starts showing symptoms between four and 10 years of age
Adult onset Alexander Disease is the rarest and usually most mild form of the disease

Chew and swallow

Tess won't develop normally, she will lose her mobility, eyesight and the ability to chew and swallow.

She has already undergone surgery to remove parts of her skull after being diagnosed with pressure to the brain.

Her mother, Helen says: "The biggest fear for us is, is she going to suffer? But we are of the mindset to take each day as it comes and have things to look forward to.

"Tess gets frustrated that she can't communicate properly. But when she is happy she is full of joy and full of laughter."

"It scares the life out of me when I think what she's going to have to go through. Tess needs a lot of visual stimulation as irritability is a symptom of the disease. She needs a lot to be going on."

Tess is expected to start at White Ash Specialist School in Oswaldtwistle for three days a week in September.

Helen adds "In some ways we feel lucky that we had an early warning. We are overwhelmed by how many people have fundraised for Tess.

"There's a permanent black cloud in the corner all the time that never goes away. But it always reminds you to make the most of every moment and not take things for granted."

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