00:00 My name is Maylin Rojas Sevilla. I have a 9 year old son, Juan Ernesto Benitez Rueda.
00:05 My son has chronic kidney failure in terminal phase.
00:09 We are from Olguin, Antilla.
00:12 But 3 years ago, when my son started with a modialysis treatment, we had to come to Santiago de Cuba
00:19 because in Olguin we do treatment for pediatric patients.
00:22 We had to leave our family, home, everything to come to Santiago de Cuba.
00:28 Here we live in a home for nephrotic patients with other patients from other provinces.
00:34 My son is in a state of alarm because he is having problems with his pistol, which is where he is being treated.
00:47 I am going to tell you a little about my son's situation.
00:50 My son was a healthy boy. He was born healthy.
00:53 But because of a bacterial bronchopneumonia, my son got sick.
00:58 Because in Olguin's pediatrician, they put him in intermediate therapy with this bacterial bronchopneumonia with pleural splash.
01:06 There they put a transfusion and they started a treatment with rosephine.
01:11 My son has an allergy and I realize immediately.
01:15 But I send to look for the specialist who was on duty that night, which is Dr. Alcibiades.
01:21 I send him to look for him, and he sees that my son has an allergy and I am desperate.
01:26 But the doctor does not listen to me and does not come to attend to my son.
01:30 My son is sick because of medical negligence.
01:35 That is my indignation and I am desperate because my son has had several complications.
01:42 And almost all of them have been not so much because of his illness and poor management, but because of lack of medical supplies here in Cuba.
01:51 My son spent a year with catheter for hemodialysis.
01:55 He had 18 pediatric catheters for hemodialysis.
01:58 Where it is expected that a catheter for hemodialysis has a duration of 2 to 3 months.
02:06 Where it is best to do a treatment of healers through an arteriovenous fistula.
02:11 But my son spent a year with catheter.
02:14 As a result of this, my son lost his hearing.
02:17 My son has difficulty walking.
02:23 My son, today, as a result of all this, his fistula was made.
02:29 But as a result of so many catheters, my son lost his vascular access.
02:33 That is, he has no veins where to put a catheter.
02:36 My son, when the fistula is made, the angiologist did work and told us that it was a very laborious operation, very difficult.
02:47 Because my son has no vascular access.
02:50 His veins are very deteriorated.
02:52 So, it is a miracle of God, thank God.
02:56 This angiologist did a good job.
03:00 He made a fistula that had a good flow.
03:03 But today, my son's fistula has been alive for 2 years.
03:07 Today, the fistula is no longer working.
03:11 That is, the complete arm where my son's fistula was made, has stopped working.
03:15 The bottom part only works the top part.
03:18 Today we are desperate.
03:19 Because if it stops working, my son has no access, no veins to put a catheter.
03:24 And my son can die.
03:25 Because if my son cannot have hemodialysis, my son dies.
03:28 And I'm desperate as a mother.
03:30 Three years ago, my husband did all the supplements to donate the kidney to my son.
03:36 And it is compatible.
03:38 Three years ago we were waiting.
03:40 Here in Santiago de Cuba, first they told me that the child, because he did not have a fistula, could not be transplanted.
03:47 When we started with all this debate with the transplant team, they told us, then we found out that it was a lie, that with a catheter my son could be operated.
03:58 That is, then as we talked about this, they told us that it is true, but then because of COVID.
04:06 That is, it was no longer for the catheter, but for COVID.
04:09 That is, when we left COVID, we returned, we met and many things, many lies, a lot of bullshit that we had here.
04:19 Now they tell us that because of the medical supplies that are not there for the child's operation.
04:24 So I, as a desperate mother, I told them to give me a list that I was going to look for the resources.
04:30 Obvious, I sell my life, I sell it for looking for resources.
04:33 The family moved, the friends, and they raised money and all the resources were bought.
04:41 When we got here, they told us then that there were no drugs for the post-operative.
04:48 That is, the transplant team of Holguin, along with the transplant team of Santiago de Cuba, met and decided that in Holguin and in Santiago de Cuba there are no resources and there are no conditions.
05:00 The operating rooms are not in condition to do this type of operation.
05:06 And that is obvious, we have it all clear.
05:09 So many people have told me in all the videos I have made that Havana, look, the Ministry of Public Health in Havana knows the case of my son.
05:24 The National Transplant Coordinator knows the case of my son.
05:29 As a result of the first video that was made, he was talked to and the prognoses are not good.
05:36 In Cuba, it is not possible, it is what they have told me, that no transplant is being done.
05:40 So what happens, as a result of all this, not even in Havana, we have exhausted all the resources there is in Cuba.
05:48 As there is no here, and everything existed from the beginning, if they had told me that three years ago, three years ago I would have requested this humanitarian visa.
05:58 As today I saw that there is no way to do this transplant here in Cuba, please.
06:04 Look, we have people who helped us in the United States, they opened a GoFundMe account, here I will leave the link.
06:11 We only have collected 3,000 and something dollars, we have to get to 10,000 dollars.
06:16 Please help us, a dollar that you donate is a dollar that can save the life of my son.
06:21 We are desperate as a family, as parents, it is painful.
06:25 Every day that my son has a treatment and he tells me, "Mom, I don't want to go for that treatment, for hemodialysis, I don't want to get more injections."
06:32 My son gets injected three times a week, he is in bed for three hours.
06:37 Every day that my son gets connected to that machine, I know that I can lose him.
06:42 Please help me, a dollar that you donate is a dollar that can save the life of my son.
06:47 Thank you.
06:48 [Music]
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