Pure nerves and energy define Liliana as she slides a broom across the room beside the living area. She then opens a door to a spacious space that belongs to a Prensa Ibérica group outlet called LA NEW SPAIN, where a kitchen flows into a living area. Marcel Sabou spends part of his days there, his body confined to a wheelchair. Today, or perhaps yesterday, they describe a time behind the cabinet, in a residence once home to a former Romania international football player who had memorable runs with Sporting in the 1990s. For ten months a new tenant has joined the household: Mario Céspedes, a family member. The family says, with gratitude, that they were very lucky to have him. He is a steady presence in Marcel Sabou’s life, giving him all the attention he needs. Ten years with ALS have shown the disease is progressing.
Over the past year the disease has advanced with unusual speed. Marcel Sabou shows limited mobility. His attempts at communication are a struggle, as he lowers his head or declines, constantly swallowing saliva in a bid to produce some sounds. His voice is nearly gone. Mario, one of Marcel’s children, and Lily, his wife, have developed an extraordinary ability to understand his way of speaking.
Mario Céspedes helps Marcel to the front of the cabin. The Sabou family shares a laptop-like device with a screen called Vehicle Talk, a communication aid that relies on the patient’s gaze. The software translates eye movements into on-screen actions. Marcel has a small set of messages ready to ease everyday conversation, such as a simple greeting or a thanks. The program allows Marcel to communicate without needing another person involved, yet every gaze movement demands extra effort from the family and can lead to exhaustion. It can take several minutes to string together four words. Liliana is at the stove, making coffee.
Hello, how are you?
Marcel Sabou speaks with effort. His voice is faint and rapidly fading. The conversation reveals the rapid progression of his condition.
Have you been left by the wayside?
Marcel signals a negative while explaining that the government has shown little interest in ALS research.
Who covers Mario’s services?
Mario Sabou answers that the family themselves cover the costs.
Does the administration offer any assistance?
Liliana confirms that the Principality provides a modest 150 euros for Marcel’s case.
Just that much? Aren’t other forms of aid available?
Marcel says that he receives a pension and disability benefits. He notes a promise from a regional leader to provide 15,000 euros per year to ALS patients, but there has been no update.
I understand.
Marcel adds that his pension amounts to 945 euros. With a 150 percent disability rate, they received a total of about 2,135 euros. The pension itself was 945 euros, and the rest reflects disability allowances.
The money largely goes toward Mario’s salary, which keeps the caregiver on duty around the clock, except for weekends.
Liliana reflects on life without Mario, and Marcel’s thoughts turn to the rest of the family. The Sabou family covers medicines and supplies through the pension, and they feel fortunate that Marcel’s father earned money from football, which helps them stay afloat. Still, many families facing ALS face ruin.
Marcel notes that there are people who become completely ruined. Some feel condemned to die because there is no cure, and the burden of care falls on exhausted relatives who must give up their jobs.
The talk shifts to a broader issue among ALS patients: the right to die. Marcel asks for understanding and voices his stance plainly; he supports euthanasia and the possibility of choosing the moment of passing. Others offer a nuanced view: the right to die should be available, but only after a real effort to help people live. The family listens in silence.
Liliana reminds that they all cling to life. The family discusses the needs of those who require tracheostomy and constant care, sometimes costing thousands of euros, money they simply do not have.
Are there beliefs or faith that guide them? Marcel replies that he believes in science and has always trusted science. He asks whether life is something to be held onto, and answers that though he has the will to live, there are moments when he collapses. He tries to redirect his thoughts toward other things, clinging to life as a dream for those who stay awake.
They ask who is being fought for in the InvestigativeLA campaign. Marcel answers that the fight is for his family, his greatest legacy, with the hope thatALS patients in the future will have the chance to live.
In sum, the Sabou family endures the challenges of ALS without a cure, facing financial strain and the emotional toll of care. The story highlights a personal resolve to live, the burdens of caregiving, and the urgent need for better support for families affected by ALS.