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Parents Battle Childhood Dementia'
1 Nov
Summary
- Sanfilippo syndrome causes childhood dementia in Leni.
- Parents are fundraising for an enzyme replacement therapy trial.
- Childhood dementia receives less funding than childhood cancer.
Leni, a three-year-old girl, is fighting Sanfilippo syndrome, a rare neurodegenerative condition that leads to childhood dementia. Her parents, Angus and Emily Forrester, received a devastating diagnosis after a six-month investigation. They were advised to "make memories" as there is currently no cure or treatment.
Sanfilippo syndrome affects approximately one in 70,000 births, hindering the body's ability to break down complex sugar molecules, causing dementia. The Forresters are now fundraising intensely to initiate an enzyme replacement therapy trial in the UK, inspired by promising but underfunded trials in the US and a successful gene therapy case in Australia.
Disturbingly, childhood dementia, which kills as many children as cancer, receives significantly less funding and policy recognition in the UK. Experts advocate for unified terminology and increased research, noting that treatments are available but not accessible due to funding and bureaucracy. The Forresters are advocating for prenatal testing and policy changes to support families facing this condition.
