A father has called for more research and support as he revealed the many struggles his daughter goes through with childhood dementia.
15-year-old Sophia Scott lives with a rare genetic condition, known as Sanfilippo syndrome, which causes childhood dementia.
Most children diagnosed do not survive into adulthood.
Her father, Darren Scott, has said that he and Sophia's mother realized something was wrong as early as when she was three years old.
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The family, who live in Glasgow, Scotland, got the official diagnosis a day before Sophia’s fourth birthday and were left distraught.
According to the Sanfilippo Children’s Foundation, around one in 70,000 children worldwide is diagnosed annually with the condition.
Speaking to Sky News, Darren said: “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.”
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The dad added: “We were left on the street, vomiting outside the hospital, collapsing, being told our daughter was going to die.”
According to the Cleveland Clinic, with no cure, the main treatment is symptom management.
The site also states: “Sanfilippo syndrome is a group of rare genetic conditions that affect several body systems but mainly your child’s nervous system.
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“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 went on to tell the 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.”
The father also noted: “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.”
Darren has gone into more detail about Sophia’s condition on the GoFundMe page with the goal of keeping her as comfortable as possible as it progresses.
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At 15, she is sadly no longer able to speak or walk.
The family want to raise awareness and hopes that more support, funding and research can go into Sanfilippo syndrome.
Speaking of the many symptoms Sophia has dealt with, Darren wrote: “Sophia has had to endure over 30 different symptoms and counting, ranging from sleep apnea and seizures to double scoliosis and bowel issues.”
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He continued: “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.”
You can donate to the fundraiser here.
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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.
Gerrard Kaonga