Pure nerves and energy, Liliana moves the broom from side to side in the room next to the living room. Then it opens the door to a large room from the Prensa Ibérica group to LA NEW SPAIN, where you can see a kitchen with an area that functions as a living room. He spends some of his days there Marcel Sabou, prostrate in a wheelchair. Today (yesterday) behind the cabinet. residence Former Romania international football playerThe team, which left good memories at Sporting in the 90s, has had a new guest for 10 months: Mario Céspedes, from the family. “We were very lucky with him,” they say. This is Sabou’s shadow. It offers you all the attention you need. “Ten years into ALS, and the disease is progressing.”
The progression of the disease in the past year has been particularly aggressive. Marcel’s mobility is minimal. The former football player’s attempts to communicate result in him making an effort to shake his head slightly or reject it, and constantly swallowing saliva to try to make some sounds. Voice disorder is complete. mario -one of his children- and Lily -his wife- has developed an extraordinary ability to understand his language.
Mario Céspedes carries Marcel to the front of the cabin. The Sabou family shows some kind of laptop with a screen. It is called vehicle talkand allows the affected person to communicate using their gaze. The software converts eye movement into approximate movements on the screen. Marcel’s circle programmed some messages to facilitate communication: “Hello, thank you very much”… The application ensures that the former football player does not need at least one interlocutor. However, every movement he makes with his gaze requires extra effort for Sabou. results in burnout. It takes a few minutes to connect four words in a row. Liliana is making coffee.
-How are you?
–Marcel Sabou (hereinafter referred to as MS). Well… Currently, the disease is already progressing rapidly.
– Were they left aside?
–(MS shakes his head). Completely. The government is not interested in researching ALS.
–Who is responsible for paying for Mario’s services?
–Mario Sabou (hereinafter referred to as M.) Us.
–So does the management offer any help?
–Liliana (hereinafter referred to as L.) Yes, the Principality gives me 150 euros for Marcel’s case.
-Only? Don’t they offer you other financial aid?
–(MS) I have a pension and a disability percentage. I am 150 percent disabled. Barbón made a campaign promise: 15,000 euros a year to ALS patients. We have no news.
-I understand.
–(MS) My pension was 945 euros and we have a 150% full disability rate. We received 2,135 euros in total. But the 945 was for my pension. The difference is due to disability.
-(I’m sure. They are a little over 1,000 Euros. But this money goes to the salary of Mario, who works all week. He is there 24/7 and only rests on weekends.
–(L.) I don’t know what we would do without Mario…
–(M.) We take care of the rest (medicine, materials…) with the pension. The truth is we are a little lucky. Our situation is better than other families because my father was finally able to earn some money from football. But other families…
In addition to dealing with ALS, for which there is no cure, there are those who go bankrupt to pay for the patient’s care. The problem is compromise. Who cares for the sick person while the person hired to provide care is resting? Eventually, many families are forced to stop working to provide necessary care to patients. And they are ruined.
–(MS) There are people who are completely ruined. They are sentenced to death.
The conversation is now turning to a central issue among ALS patients. Euthanasia debate. The right to die. To have the honor of being able to choose the moment. Marcel Sabou intervenes again. There is silence.
–(MS) I am in favor of euthanasia. That people can choose their moments.
–(M.) I think the right to choose to die should be on the table. It’s good that one can choose. But first he needs to be helped to live. Therein lies the problem of not being offered help to ALS patients.
–(L.) But we are all holding on to life.
–(M.) There are people with ALS who need tracheostomy. They also need to have two people to take care of them. And I don’t know, pay 5,000 euros. And he doesn’t have that money. What are you doing…?
–Did the illness cause you to cling to something? Are you religious?
–(MS) No. I just believe in science. I have always believed in science and I still think about science now.
-Do you want to live?
–(MS) I have the will and strength to live, but sometimes there are moments when I collapse. I’m trying to direct my mind to other things. I hold on to life: hope is the dream of the awake man.
–You know that there is no cure for the disease. Who are you fighting for right now with the InvestigativeLA campaign?
–(MS) I’m fighting for my family. They are my greatest legacy. And hopefully in the future, people who get ALS will have the opportunity to live.
Pure nerves and energy, Liliana moves the broom from side to side in the room next to the living room. Then it opens the door to a large room from the Prensa Ibérica group to LA NEW SPAIN, where you can see a kitchen with an area that functions as a living room. He spends some of his days there Marcel Sabou, prostrate in a wheelchair. Today (yesterday) behind the cabinet. residence Former Romania international football playerThe team, which left good memories at Sporting in the 90s, has had a new guest for 10 months: Mario Céspedes, from the family. “We were very lucky with him,” they say. This is Sabou’s shadow. It offers you all the attention you need. “Ten years into ALS, and the disease is progressing.”
The progression of the disease in the past year has been particularly aggressive. Marcel’s mobility is minimal. The former football player’s attempts to communicate result in him making an effort to shake his head slightly or reject it, and constantly swallowing saliva to try to make some sounds. Voice disorder is complete. mario -one of his children- and Lily -his wife- has developed an extraordinary ability to understand his language.
Mario Céspedes carries Marcel to the front of the cabin. The Sabou family shows some kind of laptop with a screen. It is called vehicle talkand allows the affected person to communicate using their gaze. The software converts eye movement into approximate movements on the screen. Marcel’s circle programmed some messages to facilitate communication: “Hello, thank you very much”… The application ensures that the former football player does not need at least one interlocutor. However, every movement he makes with his gaze requires extra effort for Sabou. results in burnout. It takes a few minutes to connect four words in a row. Liliana is making coffee.
-How are you?
–Marcel Sabou (hereinafter referred to as MS). Well… Currently, the disease is already progressing rapidly.
– Were they left aside?
–(MS shakes his head). Completely. The government is not interested in researching ALS.
–Who is responsible for paying for Mario’s services?
–Mario Sabou (hereinafter referred to as M.) Us.
–So does the management offer any help?
–Liliana (hereinafter referred to as L.) Yes, the Principality gives me 150 euros for Marcel’s case.
-Only? Don’t they offer you other financial aid?
–(MS) I have a pension and a disability percentage. I am 150 percent disabled. Barbón made a campaign promise: 15,000 euros a year to ALS patients. We have no news.
-I understand.
–(MS) My pension was 945 euros and we have a 150% full disability rate. We received 2,135 euros in total. But the 945 was for my pension. The difference is due to disability.
-(I’m sure. They are a little over 1,000 Euros. But this money goes to the salary of Mario, who works all week. He is there 24/7 and only rests on weekends.
–(L.) I don’t know what we would do without Mario…
–(M.) We take care of the rest (medicine, materials…) with the pension. The truth is we are a little lucky. Our situation is better than other families because my father was finally able to earn some money from football. But other families…
In addition to dealing with ALS, for which there is no cure, there are those who go bankrupt to pay for the patient’s care. The problem is compromise. Who cares for the sick person while the person hired to provide care is resting? Eventually, many families are forced to stop working to provide necessary care to patients. And they are ruined.
–(MS) There are people who are completely ruined. They are sentenced to death.
The conversation is now turning to a central issue among ALS patients. Euthanasia debate. The right to die. To have the honor of being able to choose the moment. Marcel Sabou intervenes again. There is silence.
–(MS) I am in favor of euthanasia. That people can choose their moments.
–(M.) I think the right to choose to die should be on the table. It’s good that one can choose. But first he needs to be helped to live. Therein lies the problem of not being offered help to ALS patients.
–(L.) But we are all holding on to life.
–(M.) There are people with ALS who need tracheostomy. They also need to have two people to take care of them. And I don’t know, pay 5,000 euros. And he doesn’t have that money. What are you doing…?
–Did the illness cause you to cling to something? Are you religious?
–(MS) No. I just believe in science. I have always believed in science and I still think about science now.
-Do you want to live?
–(MS) I have the will and strength to live, but sometimes there are moments when I collapse. I’m trying to direct my mind to other things. I hold on to life: hope is the dream of the awake man.
–You know that there is no cure for the disease. Who are you fighting for right now with the InvestigativeLA campaign?
–(MS) I’m fighting for my family. They are my greatest legacy. And hopefully in the future, people who get ALS will have the opportunity to live.