DISTRAUGHT parents has spoken out about their devastation over their five-year-old daughter being diagnosed with a terminal illness so rare less than 50 people worldwide are said to have been told they have it since the mid-90s.
From the moment Carl Morris and Lucy Jones welcomed their newly born daughter Scarlett Morris into the world in 2013 they immediately knew there was something seriously wrong.
The Risca residents said Scarlett suffered from regular seizures and fits.
But it was not until four years later that she was diagnosed with Leukoencephalopathy (Labrune Syndrome).
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The condition causes a number of restrictive features in a person’s central nervous system, which damages white matter in the brain and ultimately leads to cognitive decline.
According to a British medical journal only 50 people worldwide have been diagnosed Leukoencephalopathy since 1996.
Scarlett Morris (pictured) has leukoencephalopathy
Both parents were left “devastated” when they were told the news.
“I was totally shocked when I was told it was terminal,” said 36-year-old Miss Jones.
“I did get very upset. But there was a part of us which was relieved that we finally knew what problem Scarlett had.
“We have no idea how long we will have with Scarlett.”
And since the diagnosis, Scarlett’s condition has deteriorated rapidly. She can no longer walk, sit up or feed herself.
“What keeps us going is that Scarlett is always smiling,” said Mr Morris.
Lucy Jones and Carl Morris with Scarlett
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A GoFundMe page has now been set up to collect donations to enable the family to take Scarlett on a “once in a lifetime” holiday to Disneyland,while the family are also desperately keen to raise awareness of the condition.
“We want happy memories with her [Scarlett],” said Miss Jones.
“We are also talking about Scarlett’s condition so people can learn more about it.”
Visit bit.ly/2IoruPq to make a donation to the GoFundMe page.
A fundraising disco will also take place this Friday, at Risca Rugby Club, from 7pm, to raise further funds.
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