📢 La Lucha de una madre por el medicamento de $4 millones para su hijo
👉 Ludmila se enfrenta a la dura realidad de la enfermedad genética de su hijo Felipe, y la necesidad de un costoso medicamento llamado Evidis de 4 millones de dólares.
👉Seguí en #VivoElDomingo
📺 a24.com/vivo
👉 Ludmila se enfrenta a la dura realidad de la enfermedad genética de su hijo Felipe, y la necesidad de un costoso medicamento llamado Evidis de 4 millones de dólares.
👉Seguí en #VivoElDomingo
📺 a24.com/vivo
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NewsTranscript
00:00Does your son have something? Have you internalized it, have you learned and have you also seen everything that could be done?
00:08One always looks for what the outcomes are and within that search there is a drug that has a value of 4 million dollars.
00:17Yes, well, first of all, it was first to go through the mourning process and communicate it to the family, to his sisters,
00:27because Feli has two older sisters, it is to explain to them what they are going to live with, with what can happen,
00:34because I believe that no father, no mother is prepared to tell you, your son can live until 20, until 18, until 25,
00:45your son will stop walking at 10, 12, 14, or he will reach, I don't know, a certain age, 16 years and maybe Feli needs a tracheotomy
00:55because his lungs do not have the strength to breathe, it is very painful, Duchenne is a very cruel disease, unfortunately,
01:03and well, after going through all that process, I started as a mother, to read, I spent nights, days reading, looking, investigating about the pathology,
01:16until I came across a laboratory in the United States, I found out that the first gene therapy was to be approved, called Levidis,
01:26and that's where I started, I contacted them, I had a video call, and that's where they tell me that it was to be approved in December of last year,
01:37I had the communication in August, more or less, then I grab and they tell me that the person in charge of distributing to Argentina and other countries will be Roche,
01:47to which I was waiting all these months, I communicate with Roche this year, and he tells me that there is no news here, that it is not yet approved here, that it does not arrive,
01:58then I said, well, my only option is to travel, to access the medication there, I communicate again with the laboratory,
02:05and that's where the real problem began, where they tell me that Levidis has an approximate cost of 4 million dollars,
02:14that's where another devastating moment began, as well as the moment when I went to the family to give the diagnosis,
02:21I sat them down again and told them that the only thing I needed was for them to accompany me, because Levidis was not within our reach, economically,
02:30I think neither for me nor for anyone, because it is a very large number, so what I told them is, help me, accompany me,
02:39so that Feli takes the best quality of life possible, as long as it is necessary, let's say,
02:46and well, then back there, friends, family started, right? That Feli has to receive, something has to be done, Argentina is very supportive,
02:56we are many Argentines, and that's where we started, two or three months ago, more or less, with the campaign, and we started, yes.
03:05I ask you, Gabi, forgive me, but it is very important, we are seeing the alias on the screen, but I would like to know what is the alias where people can collaborate, what is the alias?
03:15The alias is Felipe.dmd.
03:19Because I'm trying to put it and I can't find the user, Felipe.dmd.
03:27Felipe.dmd?
03:29Yes, and his name is Luz Mila.
03:31Yes, I must have a mistake.
03:33From Banco Santander.
03:35That's important, if I make a mistake, as if I couldn't find the alias, well, it doesn't matter, we'll check it, Felipe.dmd,
03:43and when they enter, your name will appear, Luz Mila.
03:46Yes, from Banco Santander.
03:48Luzmi, how are you? Gabriela sends you her greetings.
03:52Hello, nice to meet you.
03:54I am the son of your age, of the age of your son, sorry, I get sensitive with you because it can happen to all of us,
04:06one believes that you are exempt from these things and from one day to the next, you go to the doctor, you go to the doctor.
04:11Everything falls apart.
04:13Life falls apart for you, so I understand you perfectly.
04:17I really like what your friends told you and I want to convey it to you, I mean, I can't tell you anything about the disease,
04:27I can't ask you anything about what you feel because I know it, because I feel it every time I go to the pediatrician and he tells me that he has Fibra 40 and that he has two x-rays and I don't know what to do.
04:40What I believe is that you have to keep fighting, that even if it is a peso, a peso, each person who puts, we can get to that money,
04:55a peso, a hundred pesos, a thousand pesos, it's nothing, because today it's nothing, what do you buy with a thousand pesos? You don't buy anything at all.
05:02And we can make your son's life better. I swear that I really think, the Argentine is very supportive and Felipe is going to get ahead, I am absolutely convinced.
05:17Yes, we also have a lot of faith in that.
05:20You have to keep going, you have to keep going, and really, a thousand pesos each, a hundred pesos each, what each one can put and Felipe will get ahead.
05:33And another thing I wanted to ask you, with those four million dollars, does the problem solve itself for his whole life?
05:39What this vaccine does, because the value is of a single vaccine, what they inject is microdystrophin, which is the protein that is worn out and makes your muscles lose strength.
05:53This injection can only be given between the ages of 4 to 5, 6 years of age.
06:00We have a shift in Texas on February 6th. The idea is to give him the injection before other symptoms appear, even though Felipe already has his days, his tired days.
06:15There are days that, last night for example, we have stairs at home and he climbed three or four steps and said,
06:21I'm sorry mom, I'm tired. There are nights when he doesn't sleep, he says, ay, ay, he shows you his legs because they catch him cramp.
06:31He has his days, honestly, where he gets very tired at night, despite the fact that he has his therapy, he goes to the garden.
06:40We try to make his life more than normal, but well, honestly, sometimes the symptoms get worse and that's what we don't want.
06:50Sorry to insist on this, but I think it's important to have the alias well and correctly. I'm making mistakes.
06:57Me too.
06:58Yes? Now we are going to check it because it is important, because it is good that everyone can, as Gaby said, with 100, with 1000 pesos.
07:06I tried in lowercase too and I couldn't, now it's perfect.
07:10Ah, it was blocked there too because there were people who were trying to enter.
07:17We are going to put, we are going to put with lowercase, Felipe.dmd, all in lowercase.
07:26Yes, without a point at the end, nothing.
07:28Without a point at the end or anything, well.
07:34Good. Well, we continue to try with that account and that they can contribute from there.
07:40The same on Instagram, Facebook, TikTok, well, you can find.
07:46We are going to enter the Instagram. Tell me the Instagram, Ludmila, yes.
07:49Felipe against Duchenne. All together with double N.
07:54Felipe against Duchenne, all together with double N. We are going to put it, Felipe against, yes, which is precisely the disease, right?
08:05This, this dystrophy, against Duchenne, there it is, there I found it. Felipe against Duchenne. Well, and there they have.
08:14Yes, yes, yes, yes. Here is the alias, Felipe.dmd, account holder, sorry, Ludmila Jiménez Olga, yes?
08:26There is the arroba, arroba Felipe against Duchenne.
08:31I don't give it either.
08:33It is a bi-monetary account, this is good to know too. It is a bi-monetary account, that is, it can be transferred both in pesos and in dollars for anyone who can help.
08:42You know, forgive me for interrupting you, there must be a problem with the market, because I tried it from another platform and it is leaving me.
08:48Ah, well, well, this is good, this, from a bank account, let's say.
08:52Transfer, transfer, from the, from the mode, from the mode, they could, now I am going to try from Santander, account from Santander to Santander, surely it will, it will be possible.
09:03Felipe.dmd, Jiménez Olga, Ludmila is from the Santander bank.
09:09Well, now from a bank account, then, to check, perfect.
09:15Well, Ludmila, first we accompany you from here, then we hope that Felipe is well and that he can, that he can arrive that day in Texas, you told me, right? In Texas, what is he going to do?
09:25He is going to stay overnight in Texas, with Dr. Arianna Castro, so we are, we are waiting to be able to arrive, a lot, to be able to continue viralizing, not only by saving, but by many guys, because behind saving there are many guys.
09:46Yes, sometimes the statistics, the cold statistics, of course, sometimes the cold statistics say one out of every 3,500, of course, but that one is your son, or it could be your daughter, or it could be your son, or it could be your son, or it could be your daughter, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could be your son, or it could
10:16be your son, or it could be your son".
10:46Thank you, guys. A big kiss to everyone.
10:48See you later. We'll leave on the screen the alias that we saw there, it's felipe.dmd, everything in lowercase.
10:54When you log in from a bank account, if you try it from Modo or from your bank account, you'll be able to access Olga Ludmila Jiménez,
11:04that's the name you'll find after putting that alias that we have there on the screen, and you'll be able to transfer everything, help, everything, everything, everything.
11:12From a thousand pesos, everything will help you.