Léah is a young disabled woman aged nineteen. She suffered from alternating hemiplegia of childhood, which slowed down her motor and mental development and triggered bouts of epilepsy. The last episode occurred on 19 August 2018, culminating in a two-month stay in the ICU at Caen University Hospital Centre. As with each previous episode, sedatives and a ventilator once again saved her life.
But this time, doctors determined that Léah had been hospitalised for too long. They decided that her care was tantamount to “unreasonable obstinacy”. They wrote to her parents’ lawyer stating that, based on Leonetti’s Law, they would not be able to treat their daughter the next time she suffered an attack.
Denouncing this “cynical and incompetent” decision by doctors, Frédéric Zerbib, the parents’ lawyer, expressed his outrage: “This law is against disproportionate, pointless treatments with no effect other than maintaining life artificially! But ventilation worked for Léah. The reason stated is the patient’s profound mental and motor disability. It has nothing to do with Leonetti’s Law“.
Between episodes, Léah leads a happy life in an IME during the day and with her family in the evening. She cannot talk but uses signs to let people know her preferences and what she wants. Her parents presented the court with videos showing that Léah “responds, smiles sometimes and is capable of understanding and carrying out simple instructions”.
The parents, who live in Fourneville, in the Calvados region, have sought an urgent order. The case is being examined today. The Caen Administrative Court will make a judgement between now and Friday. “My little girl wants to live! “ exclaimed Léah’s father, Frédéric Benhini.
For further reading:
 Institut Médical Educatif (clinic for children with developmental disabilities).