A recent article is raising awareness for Childhood Dementia that is caused by a number of conditions including Sanfilippo syndrome. This is a rare inherited condition that falls under a group of diseases called lysosomal storage disorders. The body is missing certain enzymes which are needed to break down complex sugars and because of this, these substances build up in cells (in particular, in the brain) which causes progressive damage. It mainly appears to affect children and causes progressive brain deterioration. Children may seem normal in early development by symptoms appear over time.

Common symptoms include loss of speech and communication skills, behavioural changes (hyperactivity and sleep problems), difficulty walking and movement issues and finally gradual loss of memory and cognitive abilities. The condition worsens over time and sadly it is life limiting with many children not surviving into adulthood. It is a genetic disorder where the children inherit the faulty gene from both their parents.

The article speaks about Sophia Scott and how her condition has worsened and now that she is 15 years old, she cannot speak or walk unaided. Her parents are preparing for the fact that she may not live beyond her 16th birthday. Her parents are campaigning and raising awareness as when she was diagnosed around 10 years ago, the doctors gave them a sheet of A4 paper and sent them away with little advice, care or support. Despite this, the condition is less rare than one would believe. In Scotland, around 380 families are affected by Childhood Dementia and there are around 204 deaths each year in the UK. The figures for childhood cancer are around 260 deaths. The charities say that the condition is caused by more than 145 rare genetic disorders including Sanfilippo syndrome but families are rarely given the support they require. Sophia’s parents want to prevent families from facing this challenge alone so continue to raise awareness.

https://www.bbc.co.uk/news/art...

1. What condition does Sophia have, and how has it affected her life?

2. How did Sophia’s diagnosis impact her family emotionally and practically?

3. What wider issue does the article highlight about childhood dementia?