A three-year-old from Huncoat is one of just 50 children in the world suffering from a rare terminal condition.
Toddler Tess Sullivan has Alexander’s disease, a genetic degenerative disorder and parents Helen and Steve hope the town will rally round and help make her final years magical.
The tragic youngster has already undergone surgery to remove parts of her skull after being diagnosed with pressure to the brain.
Optimistic estimates suggest she may live until aged 10, but life expectancy could be as little as another two years.
As the illness progresses she will lose her mobility, eyesight and the ability to chew and swallow. There is currently no cure for the disease.
Helen and Steve, of Bluebell Way, Huncoat, are determined to take Tess and her two brothers Tyler, 12, and Max, 17 months, to Lapland this Christmas on a dream trip.
Helen, 31, deputy headteacher of a primary school in Rossendale, said: "Thanks to the Make-A-Wish Foundation UK and efforts from so many fundraisers we have just got back from a trip to Euro Disney.
"It was one of our aims to go there and thanks to so much love and financial support, Tess had a great time. But Lapland is a big aim this Christmas. Tess loved the snow last year and was so happy in it. Because time is of the essence we want her to go and meet Father Christmas."
She added: "At the moment it is the best it is going to be. I can still cuddle Tess, kiss her and laugh. We are trying to focus on the present because she deserves a happy family because she doesn’t know what is happening.
"The reality of how things are going to change and when they are going to change is what scares us," said Helen. "We want her to have lovely things while she can still interact and is okay. She is still on the up at the moment but there is no telling when that’s going to stop."
Tess was born in the Royal Blackburn Hospital with no health problems but at 11 months she stopped developing and doing anything new.
A few months later the Sullivan’s were told she had developmental delay after they’d noticed her forehead was getting bigger – a result of her brain growing forward and out of her skull.
Three months after surgeons removed parts of the skull Tess suffered an epileptic fit. And in December last year, after suffering another fit, the Sullivan’s were told their beloved daughter Tess had Alexander’s disease following the findings detected in a MRI scan.
Helen said: "It was unbearable at the time. It was your worst nightmare come true. We thought it was going to be a developmental problem but all of a sudden we knew we were going to lose her, our child. You never think that you will outlive your child.
"I grieved at the time for the future I couldn’t have with my child. You think, this isn’t the life she was supposed to have. But she’s still here so we have to create a different life so we are focusing on what we can do in the short time we have."
Brave Tess is expected to start at White Ash Specialist School in Oswaldtwistle for three days a week this September.
‘I heard the news and all but forgot to breathe’
WHEN Helen Sullivan found out her first child wouldn’t live beyond the age of ten she had to remind herself to breathe.
It was in December last year that doctors told her and her husband Steve that their then two-year-old daughter Tess had Alexander’s Disease.
The illness is one so rare that it only affects 50 infants worldwide.
During that defining meeting on December 19 Helen - the deputy headteacher of St Peter’s Primary School in Newchurch, Rossendale - and Steve, of Bluebell Way, Huncoat, were also informed there was no cure for the disease and that Tess would die between the age of five and ten-years-old.
Describing the moment she found out her daughter’s fate Helen, 31, said: "At first I had to remind myself to breathe. I couldn’t eat and couldn’t sleep and wanted to be with her every second of the day. She was my first child and I had nothing to compare it to," she added.
Tess had been born with no health problems but at 11 months stopped developing or doing anything new.
A few months later - after the Sullivan’s noticed Tess’s forehead was getting bigger - a pediatrician told them the youngster had developmental delay.
To combat the problem surgeons removed four slithers in Tess’s skull after her parents had received advice from a cranial osteopath.
But three months after the operation Tess suffered an epileptic fit.
"That is when they did an MRI scan," said Helen. "We were told she might have to wait three months for the results. In that time she had another fit in the middle of the night which lasted 20 minutes. So in December she was admitted to hospital again."
Helen and Steve were told the scan had been analysed by an expert in Amsterdam who was 90 per cent sure that it was Alexander’s disease.
In early January - following specific blood tests - it was confirmed that a gene had been found in Tess’s blood and it was 100 per cent certain that she had Alexander’s disease.
Helen said: "It was horrendous at the time. There was a real resentment at first as to why my child was suffering. But horrible things happen to good people all the time and it is how you deal with it that matters."
Helen says her husband Steve, 43, a joiner, his 12-year-old son Tyler and their 17-month-old Max can help Tess by spending as much time together as possible.
The family has already been to Center Parcs and Euro Disney and are hoping, through money raised from community fundraising activities, that they’ll be able to take Tess to Lapland this Christmas.
Helen said: "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."
She added: "Sadly the epilepsy could probably get worse, she will lose her mobility, lose her ability to swallow and chew and her eyesight will go and she will start to shut down basically. 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 this September.
Helen added: "In some ways we feel lucky that we have 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 every moment and not take things for granted."
* You can donate to the Sullivan family in aid of Tess through the Paypal account 73HFRARXZJ3TG in the name of Helen Sullivan. You can also donate by making cheques payable to Helen Sullivan C/O St Peter’s Primary School, St Peter’s Road, Newchurch, Rossendale, Lancashire