The Bardet, The Biedl and Me

Doctor with medical card

The door was closed for a long time. I sat in the waiting room of The Doctor’s office and stared at it from across the room. I waited as my mum instructed me to wait while she talked to him. On this occasion I didn’t understand why I couldn’t be with her in the appointment like I normally was. But I also didn’t mind waiting outside his office; I hated doctors at that age. So I sat quietly and stared at the closed door, wondering when it might open.

‘He’s going to lose his sight in his 30s, Elham,’ The Doctor said. ‘That’s the norm for sufferers of Bardet-Biedl Syndrome.’

My mum sat silently opposite The Doctor as he said this. Her expression was strong and still. There were no tears left in her eyes. She sat opposite The Doctor and listened silently to his diagnosis.

‘I’m afraid he won’t…

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