A FOUR-year-old girl suffering from a rare terminal condition is set for a dream holiday.
Tess Sullivan, from Huncoat, has been diagnosed with Alexander Disease, a rare genetic degenerative brain disorder, which is believed to affect just 50 youngsters across the world.
She is expected to die between the age of five and ten-years-old as there is currently no cure for the disease.
Tess is unable to speak and will eventually lose her eyesight, the ability to chew and swallow and her mobility.
But thanks to generous fundraisers Tess, dad Steve, mum Helen and brother Max are planning a fun trip on a Mediterranean cruise featuring her favourite Disney characters.
Steve, 44, from Bluebell Way, said: “We just try and keep a smile on her face.
“We could be facing bad times in a year but it could be five or six years away.
“The Make a Wish Foundation sent her to Disneyland Paris when they heard about her plight and this cruise is all from fundraising money.
“She is such a beautiful little thing that she does take people’s hearts.
“It’s just a crying shame and it’s not fair, but we’ve got to dig in and carry on and do the best with the time we’ve got.”
Tess’ mum is the headteacher at St Peter's Primary School in Newchurch, Rossendale.
Last Thursday, Rossendale Round Table held a ‘Spice Night’ social evening at Ashoka Indian restaurant in Burnley.
Tickets and a raffle raised £750, which was split equally between Tess, Rossendale Hospice and the Rossendale Rays, while a sports memorabilia auction raised a further £685 for her family.
Steve said: “We’re so grateful to all the people who have helped Tess.
“They have been phenomenal.”
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 Alexander disease in December 2009.
She has already undergone surgery to remove parts of her skull after being diagnosed with the separate issue of pressure to the brain.
She currently attends White Ash day special school in Oswaldtwistle.
Steve said: “She goes swimming on a Thursday and last week she got her grade one Duckling swimming badge and certificate.
"Little things like that just make your heart swell.
“We took her to Centre Parcs and we were trying to get her to say words.
“When we asked how old she was she said a noise like ‘four’. These are skills she isn’t supposed to get at all.
“We live in hope.”
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