The day before Sophia Scott celebrated her 4th birthday, her parents were summoned to a Glasgow hospital room. Five doctors stood waiting.
Within moments, they were given the worst possible news they could have heard: their daughter had childhood dementia and was unlikely to live beyond the age of 16.
“It was delivered like a complete thunderbolt,” Darren Scott told Sky News.
“We were told… there was nothing they could do. It was a moment that broke us, shattered our lives. We have never recovered.”
The family, who live in Glasgow, were given an information sheet and phone number if they wanted advice – and then sent home.
Very little was, and is, known about Sanfilippo syndrome, which is what Sophia is living with. It is one of more than 140 genetic, rare neurodegenerative, metabolic conditions.
“We were left on the street, vomiting outside the hospital, collapsing, being told our daughter was going to die,” the 46-year-old dad said, in a highly emotional interview.
What makes this even more distressing was, just moments before, life had been completely normal.
How was Sophia diagnosed?
Sophia’s nursery had raised concerns about her reading abilities regressing. Her mum and dad ordered glasses and arranged some tests. The results left a once-bubbly, horse-obsessed, outdoor-loving girl now unable to speak or eat and walk by herself.
There is no official data on exactly how many youngsters are living with childhood dementia, but campaigners at Alzheimer Scotland estimate there are at least 400 young people in Scotland alone.
It is now almost a decade since Sophia’s life-altering diagnosis was delivered. The Taylor Swift fan turns 15 years old in February.
Darren said: “Life has been robbed and stolen from Sophia. My little girl, who was all singing, all dancing, ballet, swimming, skiing… is having her life slowly and surely drained from her every day. I have to sit and watch that.”
Since her diagnosis a decade ago, Sophia has lost most of her abilities. Her family say she progressed like an average child up until the age of six, when her decline slowly began.
“Throughout that period, she has lost her speech, which is incredibly difficult,” Darren said.
“Those last words begin to fade and you try to hold on to them.”
“There is no support, there is no funding, there is no research, there are no trials,” Darren added, as he drew comparisons with the vastly different approach for adults and elderly people suffering from dementia.
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‘Race against time that we’re losing’
A recent report concluded parents and children dealing with dementia are being “catastrophically failed” due to a lack of knowledge and understanding of the condition.
Alzheimer Scotland’s Jim Pearson, who is the chair of Childhood Dementia Scotland, told Sky News: “Children and families are often isolated. I think misdiagnosis is often the case.
“Getting a diagnosis is really difficult because actually what does happen is that it is sometimes misunderstood and mischaracterised.
“Children are often diagnosed with conditions like ADHD or potentially autism. Parents often have to fight… that journey for families can sometimes take two or three years.”
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Darren has travelled the world meeting medical experts in a frantic attempt to find a cure that would help his daughter and many others.
“We were told she wouldn’t live long, with an average life expectancy of 16,” he said.
“Sophia will be 15 in February. It’s criminal that we were given that timeline as it’s forever embedded in our heads in this race against time that we’re losing.”
The Scott family say clinical trials may finally be on the horizon. But for Sophia, whose condition is now advanced, they fear it could be too late.
