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Tess Sullivan's Rare Alexander Disease - featured August 13, 2010

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[Source: BBC]

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.

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.

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Read the NINDS Fact Sheet on Alexander Disease

Tags: Alexander Disease News of the Week Newsletter 13 August 2010 SLP Rare Diseases and Disorders