Ellie has CHAT Congenital Myasthenic Syndrome – a myasthenia caused by a gene fault that is characterised by apnoea and respiratory arrest. Ellie had hundreds of respiratory arrests and four cardiac arrests before she was 15 months old. She was ventilator-dependent for many months and still has a tracheotomy in place today, age 5 (right). Her parents were told she was unlikely to survive, however, today she is in mainstream school with support.
back to our children