Diagnosis: Anticipatory Grief
The road to diagnosis … Do we wish we had known earlier? (CLN2/Batten)
Parents of two sons, one of whom has CLN2 (Batten disease), talk about their son’s road to diagnosis — at first they thought it was epilepsy, then autism. Going from that to a genetic diagnosis was devastating. Yes, we want early diagnosis but in some ways it was pretty nice to be clueless those first 3 years.