Lamia El Aaraje on life with ALS: “I want to be his wife, not his caregiver”
Diagnosed in 2024, Julien Parelon is living with ALS. He and his wife, Lamia El Aaraje, Paris’s first deputy mayor, describe the loss of independence, administrative hurdles and upheaval in family life in a book due out on October 15.
At home, someone now stays with Julien Parelon around the clock. His caregivers help him eat, get around and perform the everyday tasks the disease has taken from him. In an interview published on October 7 by Paris Match, he also describes how this constant presence has changed their private life: even a meal with his wife takes place with a third person present.
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According to Julien, the first difficulties date back to late 2021 and early 2022: fatigue, difficulty climbing stairs, objects slipping from his hands. During a holiday in Morocco in 2024, Lamia noticed that he was struggling to keep up with her. He dropped his cutlery and found it hard to lie down. He was diagnosed that year, at the age of 42.
The couple have two children, aged 6 and 10. Julien says his daughter has no memories of him before the illness. Lamia says she looked for a child psychiatrist to support them, but then encountered care that was poorly suited to children so young.
Appointed Paris’s first deputy mayor in March, the Franco-Moroccan elected official continued her career with her husband’s approval. “My greatest dream is for her to achieve hers,” he says. She describes days planned down to the minute, balancing municipal responsibilities, the children and running the household.
Being his wife while shouldering day-to-day care
On top of providing care come forms, supporting documents and dealings with government offices. Lamia El Aaraje acknowledges that she has called on contacts to resolve some issues. A pharmacy graduate with a law degree in health law, she questions the obstacles faced by families with fewer resources and connections.
She says she pushed herself to her physical and mental limits before asking for the care plan to be reassessed. “I want to support Julien as his wife, but not as his caregiver,” she explains, while acknowledging that in practice she takes on that role.
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The illness has also caused tensions between them. Julien says he realized how much his wife was suffering when he read her interviews for the book, which were conducted separately from his own. Lamia says she considered leaving. Both say they found some peace by talking about what they were going through.
Their accounts make up Les Empêchés — Nos vies face à la maladie, written with journalist Tiphaine Pioger. Leduc publishing house says the 256-page book will be published on October 15.
