I was 29 when my daughter Breanne was born.
She was beautiful and perfect, and I was completely in love.
At first, everything was wonderful.
She was a happy baby.
But at just a few weeks old, she suddenly stopped breathing properly and I rushed her to hospital.
She suffered a seizure and was taken straight to intensive care.
I watched in torment as doctors struggled to figure out what was wrong with her.
The seizures continued and eventually Breanne was diagnosed with Dravet syndrome, a very rare and life-limiting form of infant epilepsy.
Despite having spent years working as a critical-care and paediatric nurse, I’d never heard