A father is advocating for increased research and support due to the numerous challenges his daughter faces living with childhood dementia.
Sophia Scott, aged 15, is affected by Sanfilippo syndrome, a rare genetic disorder that leads to childhood dementia.
The prognosis for children diagnosed with this condition is often grim, as many do not reach adulthood.
Darren Scott, her father, mentioned that he and Sophia’s mother noticed signs of concern when Sophia was merely three years old.
Residing in Glasgow, Scotland, the family received Sophia’s official diagnosis just one day before her fourth birthday, leaving them devastated.
The Sanfilippo Children’s Foundation notes that the condition is diagnosed in approximately one in 70,000 children worldwide each year.
In an interview with Sky News, Darren recalled, “It was delivered like a complete thunderbolt.
“We were told … there was nothing they could do. It was a moment that broke us, shattered our lives. We have never recovered.”
Darren further shared, “We were left on the street, vomiting outside the hospital, collapsing, being told our daughter was going to die.”
The Cleveland Clinic explains that, while there is no cure, treatment focuses on managing symptoms.
The clinic’s site describes, “Sanfilippo syndrome is a group of rare genetic conditions that affect several body systems but mainly your child’s nervous system.
“It happens when their body can’t break down a certain substance, which builds up in cells and damages them. Symptoms of Sanfilippo syndrome begin in early childhood and worsen with time.”
Darren expressed to the news outlet: “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.”
He also mentioned: “Throughout that period, she has lost her speech, which is incredibly difficult … Those last words begin to fade, and you try to hold on to them.”
Further details about Sophia’s condition are provided on the GoFundMe page established with the aim of ensuring her comfort as the condition progresses.
Now at 15, Sophia is unable to speak or walk.
The family aims to raise awareness and push for more support, funding, and research dedicated to Sanfilippo syndrome.
Discussing the numerous symptoms Sophia has endured, Darren stated, “Sophia has had to endure over 30 different symptoms and counting, ranging from sleep apnea and seizures to double scoliosis and bowel issues.”
He elaborated: “As the condition has taken a grip, we have had to helplessly watch Sophia’s abilities like walking, talking, and eating all slowly fade away from our once bubbly bundle of joy. The twinkle in her eye is still there, as is the cheeky grin, but so much has been heartbreakingly stolen from her and in turn us.
“We fight for our daughter and others like her to be recognized, supported and cared for in the same way dementia is in adults or other terrible childhood conditions like cancer.
“We cherish every moment we have, refuse to give up and are grateful for all of the love and support that we have received in the ten years since her diagnosis.”
If you wish to contribute, you can donate to the fundraiser here.
If you’ve been affected by dementia or Alzheimer’s and would like to speak with someone in confidence, contact the Alzheimer’s Association via 800.272.3900 open 24 hours seven days a week.