Diagnosis and Early Years
Just before her fourth birthday, Sophia Scott's parents received the devastating news that she has a condition causing childhood dementia.
They were given a single sheet of paper and advised to cherish the time they had with her.
Now 15 years old, Sophia can no longer speak and cannot walk without assistance. It is possible she may not live beyond her 16th birthday.
Her father, Darren, and mother, Amanda, are separated but both remain actively involved in her care.
Darren balances his role as a hospitality manager with caregiving duties, while Amanda left her job to provide full-time care for Sophia.
Darren also advocates to raise awareness of Sophia's condition, Sanfilippo syndrome.
Sanfilippo syndrome is a rare, inherited, progressive, and incurable disorder.
Sophia's early childhood was joyful. Darren, from Glasgow, described her love for dancing, cooking, playing, and attending school.
Although some developmental delays were noted, there were no indications of the severity of the condition to come.
"We didn't have any concerns there was something remotely wrong,"he told BBC Scotland News.
"There were some delays on her markers, but we didn't think anything this huge.
We were basically given a life sentence, this progressive incurable disease was going to take our only child.
We were given a piece of A4 paper, and essentially told to make the most of the time we had."
Darren stated that the couple received no professional support or guidance at the time.
"We were told to make memories,"he said.
Darren and Amanda were so overwhelmed by the diagnosis that they became physically ill outside the hospital.
"We were collapsed outside - we were told our daughter is going to die,"Darren recalled.
"In that moment we both were broken, our lives had been shattered.
We were in a complete state of shock and left feeling like what do we do now? Our life had changed forever and we felt alone."
What compounded the difficulty was that life initially continued to feel normal for some time.
The condition progresses gradually, so for several years Sophia, an only child, remained very much herself.
This left the family grappling with the knowledge of what lay ahead while trying to maintain everyday life.
Progression of the Condition
As Sophia aged, the disease advanced.
Darren noted that by six or seven years old, changes in Sophia's behaviour became more apparent, including hyperactivity and mood swings.
Her condition steadily worsened, and she has now lost the ability to speak.
"We would look at Sophia, this perfectly happy little girl and think why her? Why? And how is this all going to change?"he said.
"We just kept looking at every little thing she did and thought will that be the last time she does that? Or will this be the last time she says that?"
Darren described the difficulty in coping with Sophia's inability to communicate discomfort or pain.
One of the most painful aspects has been no longer hearing her voice.
"As for her last words, like much of her loss, it's all rather cloudy and painful,"he said.
"It's all such a slow decline but we would sing together as much as possible as she'd remember the words of her favourite songs and smile.
She always said I love you a lot and we have a video late on of her still just managing to say this."
Awareness and Support Efforts
Campaigners highlight that childhood dementia remains one of the least understood and recognized life-limiting conditions affecting children.
The charity involved states that the condition results from over 145 rare genetic disorders, including Sanfilippo syndrome, and that families often navigate it without clear care pathways or support.
Alongside caring for Sophia, Darren has become an advocate for families affected by childhood dementia.
He collaborates with Alzheimer Scotland and has spoken at the Scottish Parliament to promote greater awareness and practical assistance.
Darren also uses his Instagram page @hundredsofpromises to raise awareness and connect with families worldwide facing similar challenges, including in Australia, where support systems for children with dementia and their carers are more advanced.
Although Sophia's family receives some support, Darren notes it is insufficient.
They are entitled to approximately 20 hours of care weekly, but beyond that, most responsibility falls on him and Amanda.
The Scottish government recently announced funding of £118,873 to Alzheimer Scotland to employ two new childhood dementia development officers, making Scotland the first UK country to provide this dedicated support.
The officers will focus on raising awareness, enhancing professional understanding, and ensuring support networks for affected families.
Health Secretary Neil Gray stated:
"Childhood dementia may still be considered rare but for many it can be life-limiting.
That's why we're doing all we can to maximise life expectancy and to ensure families have access to the support and care they need."
Darren welcomed the initiative but emphasized it underscored the previous lack of support for families like his.
In a December 2025 report, Alzheimer Scotland urged inclusion of childhood dementia in the national dementia strategy, alongside a standardized care framework and increased research funding.
The charity acknowledged the new roles as a positive step but stressed more action is necessary.
Jim Pearson, deputy chief executive of Alzheimer Scotland and chairman of Childhood Dementia Scotland, stated in the report that childhood dementia remains largely invisible within health, social care, and education systems.
"Families cannot wait. Scotland must act now so every child gets timely, compassionate support."
Looking Ahead
For Darren, the priority is not only raising awareness but ensuring Sophia's remaining time is as comfortable and supported as possible.
"No family should ever receive a diagnosis like his daughter's and be left to face it alone,"he said.
