Discovering my toddler has dementia was the worst moment of my life... so when a test revealed her unborn sibling also had the disease we had no choice but to terminate my pregnancy

Key Points:

• Leni Forrester, a two-year-old from London, was diagnosed with Sanfilippo syndrome, a rare and incurable childhood dementia causing progressive loss of motor skills and early death, prompting her parents to terminate a second pregnancy after prenatal testing showed the unborn child also had the disease.
• The couple experienced intense grief after initially receiving incorrect genetic test results and faced the heartbreaking decision to end the pregnancy due to the disease's catastrophic prognosis and lack of treatment options.
• Sanfilippo syndrome results from a recessive gene causing toxic buildup in the brain, leading to severe developmental delays and physical symptoms; most affected children die by their mid-teens.
• Leni's parents have raised over £360,000 to support research into a promising gene therapy treatment entering clinical trials in the US, and they are urging the UK Government to fund trials and implement newborn screening for rare genetic diseases.
• Despite Leni's condition, her parents cherish her milestones but emphasize the urgent need for treatment, highlighting that early intervention could significantly improve quality of life and longevity for children with this devastating disorder.