Parenting a Child with Smith-Lemli-Opitz Syndrome January 2026

Parenting a Child with Smith-Lemli-Opitz Syndrome January 2026 In this interview led by Matt Bolz-Johnson, our Former ATMP & Mental Health Advisor, Antje Enekwe reflects on raising a child with Smith-Lemli-Opitz syndrome. Through an unexpected diagnosis and the daily realities of parenting a child with Smith-Lemli-Opitz syndrome, Antje Enekwe shares how she navigated sleepless nights and major life changes, and found resilience through a support network – holding onto small moments of joy that continue to shape their family’s future. https://www.eurordis.org/parenting-a-child-with-smith-lemli-opitz-syndrome/