Picture this. The most precious thing in the world to you, your newborn child, is deeply unwell, suffering with painful seizures. You know that every time it happens it could be doing damage to their development. They go through test after test, many of them intrusive and painful. Different treatments are tried, some with excruciating and potentially damaging side-effects. Huge efforts are being made on your child’s behalf, but no one knows exactly what is wrong or how to make it right.
I know because I’ve been there. My eldest son, Ivan, was born with what we later found out was Ohtahara syndrome, a neurological disorder so rare that there was barely a diagnosis, let alone a cure.
I will never forget the moment of