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Parents Terminate Pregnancy Due to 'Childhood Dementia' Diagnosis
20 Apr
Summary
- Parents discovered their family carries a gene for Sanfilippo syndrome.
- Their unborn child and existing daughter were diagnosed with the disease.
- The parents made the difficult choice to terminate the pregnancy.

A London couple has shared their profound grief after being forced to terminate a wanted pregnancy due to their unborn child also being diagnosed with Sanfilippo syndrome, a rare genetic disorder dubbed 'childhood dementia.' Their two-year-old daughter, Leni, was previously diagnosed with the condition, which progressively erodes motor skills and has no known cure.
Initially, the family learned they carried a recessive gene for the disease after a relative underwent genetic testing. While Leni began showing symptoms like speech delay, further testing confirmed her diagnosis. Tragically, by this time, Emily and Angus Forrester had already begun trying for a second child. Subsequent prenatal testing confirmed the fetus also had Sanfilippo syndrome.