My daughter has childhood dementia and may not live past 16

What’s Happening

So get this: Diagnosed just before her fourth birthday, Sophia, now 15, can no longer speak and cannot walk unaided.

My daughter has childhood dementia and may not live past 16 8 hours ago Save Add as preferred on Google Gabrielle Williamson and Catherine Lyst , BBC Scotland Darren Scott Darren Scott cares for his daughter Sophia, who is now 15 Just before her fourth birthday Sophia Scotts parents were told she had a condition that causes childhood dementia. They walked away with a single sheet of paper and were advised to make the most of the time they had left with her. (wild, right?)

Now 15, Sophia can no longer speak and cannot walk unaided.

The Details

She may not live past her 16th birthday. Her dad Darren and mum Amanda are now separated but both help care for Sophia.

Darren Scott Sophia, who was diagnosed at the age of four, had a happy early childhood Darren juggles this with his job as a hospitality manager while Amanda left her job to look after her. He also campaigns to raise awareness of Sophias condition, Sanfilippo syndrome.

Why This Matters

It is an inherited, rare, progressive and incurable condition. Sophias early childhood was happy. Darren, from Glasgow, dropped she loved dancing, cooking, playing and going to school.

This is the kind of health news that affects everyday decisions.

Key Takeaways

• “We didnt have any concerns there was something remotely wrong,” he told BBC Scotland News.
• “There were some delays on her markers, but we didnt think anything this huge.
• “We were basically given a life sentence, this progressive incurable disease was going to take our only child.

The Bottom Line

Darren dropped the couple were given no support or expertise. “We were told to make memories,” he dropped.

Are you here for this or nah?