The talk with María Teresa was one of those moments in which the encounter with a person enriches you and heals you at the same time. I say "heal" because we all carry wounds in our hearts that are looking for a balm. And this mother of seven children discovered that "ointment" for her soul in her last child: José María. A different child who gave an unexpected turn to his life and to thousands of people who will be affected by his story without knowing it.
As a business card, I would say that María Teresa Robles has been married to Íñigo for 25 years, and is the mother of 7 children. It is true that each child is unique and unrepeatable, but today we want to focus on the youngest, number 7: José María. What makes José María special? What is his specialty to the point that he has the nickname of “Enchufadito”?
M- I think that the gift with which he was born makes him special, that extra chromosome with which he was born, which threw us a lot, the first one for me. When they put it on me I didn't expect it and now I say: “what a pity I didn't know what it was like to have a person with Down Syndrome”. When people tell me: “I have had a brother with Down Syndrome”, “I have had a relative”, They seem like lucky people to me, I look at them with real affection, because I think "you have something that I did not have, and that made me not know how to appreciate, at first, all the value that my son brought".
We have a stigma imposed by society, that although we always say "people are worth themselves and have infinite value", when it comes to us, we are not amused. Because deep down we have that weight of society that tells us: "you have a problem", and a son is never a problem, math problems, a son is lucky, come how he comes. What a son has to be is to be loved.
The other day I heard a mother say: when you are expecting a baby they tell you "Well, the important thing is not that it is a boy or a girl, but that it comes healthy", and she said: "No, the important thing is that he comes loved, that he is loved and that he is loved during his life"It is the most important thing, because in reality the most important thing we have left is love and my son José María is what he does, giving love. And he gives it in abundance, he teaches us what pure love truly is. There are very few in the world who can give that pure love, he has that gift that changes his surroundings, he not only changed me completely, but also my children, my neighbors, and incredibly the people behind from his Instagram account, because I'm not the one behind it, it's my son… I'm the secretary, I simply transcribe what I see. It's him, he has the power, he has the change. I am an ordinary lady, but he has incredible transformative power.
How was that arrival of José María?
M- Well, the arrival of José María was a disaster, a jug of cold water. I have another son with an intellectual disability named Ignacio, he is also a jewel. He thought that I was already covered, plus 7 children, I considered myself a good person who had met all the expectations of the world and who did things well.
It was a humbling experience, to begin with, you are neither better nor worse, neither much nor little... but I was expecting a son who we believed had hydrocephalus, which is a serious illness. They did some intrauterine tests and it was clear, they referred us to the Hospital de La Paz, a place of medical reference in Madrid, and we were there. He was born prematurely, I and all the doctors were expecting a child with hydrocephalus. When he was born, a child with Down Syndrome was put in my arms. "Hello, who was wrong?" My husband and I looked at each other. Everyone was running there, there was a lot of fuss, they put him on me and immediately took him away to see how he was. I didn't have time to see him well with the hat, but of course, he is the seventh, his eyes were a little slanted, so I said: "this child has Down Syndrome."
I noticed it right away. It had been a closely monitored pregnancy, because it was a child with hydrocephalus. The hydrocephalus had disappeared and people can think what they want, but the truth is that many people had started praying like crazy for the hydrocephalus to disappear, and, in fact, they have the hydrocephalus hole in their left breast; but the hydrocephalus was not there, what was there was a child with Down Syndrome.
I followed the umbilical cord thinking that it had been changed. But how are they going to change the child in a hospital while I'm there?! That you see that it comes out and they put it on you, it is not possible. But, at that time, hormones are not the best companions.
And then the child left with my husband, and when I was left alone, my world collapsed. I always say that I got a gray cloud. I imagine it like cartoons, raining, clouds, lightning and at that moment I said: "No, no, no, look, Lord, if he has heart disease, take him away, I can't handle this." Of course, now I say it and I get emotional, and it makes me guilty, what mother says that about a child? But I would come back again, I would recover and I would come back again and say: "No, no, it's that I can't do this, that it's a mistake, that it's not, that I don't have Down Syndrome, I can't." I was horrified, I thought "I already have my life destroyed, I will no longer be able to travel, I will not do anything in life."
"We must not forget that a child is a person and that they have a dignity of their own, we do not give it to them, we are not the one to give dignity to anyone, they have it intrinsically"
And what happened? Because this woman whose life suddenly takes an unexpected turn, she is not the woman I am chatting with this morning nine years later.
M- What happened is that I was wrong, I didn't know what a person with Down Syndrome was. She had a wrong concept of the person, I thought that she had it super well caught but it was not like that, far from it. We are all interesting, we all have something to contribute and our children are not a problem because they are not what we expect, what happens is that we have to take a journey that we did not have in mind, and perhaps we do not even know what to do, and that is why we fear invades I did not know how to accept all this at first.
My older brother appeared and told me, "Look, you have to go through a duel now, and these are the steps, The sooner you pass them, the sooner we will know what José María is bringing, because we will see it through your eyes”. And it's true, I said: "Well, we will have to discover what it brings". I had no idea, I didn't know, but I said: "The sooner I do the steps, the sooner I'll gain everything it brings and I won't be losing it."
He was in the ICU for a few days, I went to see him every day and when I saw him I fell in love, he transformed me. When I left the hospital 10 days later, I left in love with my son, not knowing what was going to happen to my life, but knowing that he had a gift in my house. When I told my family about it, I realized that they saw it much more naturally, with less prejudice than I had. That is why I understand people who have prejudices when they see disability, because I am the first to have them, and I understand those mothers who consider having an abortion, I understand the pain and I understand the frustration and suffocation of saying: "what I do? I'm not going to know what to do with this son."
But we must not forget that a child is a person and that they have a dignity of their own, we do not give it to them, we are not the one to give dignity to anyone, they have it intrinsically. And that makes them invaluable, that's what my little José María has been teaching me.
At 3 years old, this story takes an unexpected turn again.
M- Yes, when we were super done and in love and we said: “we have a little gem”, everything takes a turn. In May 2016, José María was diagnosed with acute lymphoblastic leukemia. That was a big hit.
A cloud that would hang over his head again, right?
M- Well, that was not a personal cloud, that was a cloud of: "Let's see God, first you give it to me when I don't want it and now you want to take it from me when I can't live without it, it doesn't make sense, there is something here that I don't…”.
And the truth is that it cost me more, thinking "My God, the death of a child is unnatural, it is an absolute tear of the soul."
When we entered oncology, after being told: "You have a child with a deadly disease, and in a child with Down syndrome it is even more toxic." We started a process, the process that all children must go through when they have leukemia. That was how I got into oncology for the first time. I imagined a gray, dark, black place, everyone crying in the corners, and I found myself a place of happiness and joy. Those mothers that I began to know gave me an incredible lesson. They were all very cute, each one with her style, all made up, arranged, and I thought: "but they haven't slept"but there they were. It was something incredible, and I said: "You have to get that strength out, and you have to get that fighter that you have inside."
José María was the one who taught us to bring out the fighter that one has inside. Take it out and start fighting, stop thinking about yourself, stop crying and see what you have to start doing. And we stayed like that until we finished maintenance, which maintenance sounds like "We're finishing!" but in maintenance José María relapsed.
Normally a child who has an oncological process of leukemia is offered a marrow transplant, and that is what they told us for José María: "You have two options: either bone marrow transplant or palliative care." Palliatives is a part of the medicine that accompanies you in the last days of your life, which for some is long, for others it is shorter, but in the situation that José María was in, it was two months at the most.
We asked "but why?" and they told us: “He is not going to stand the chemotherapy that he is given. It is very hard, and then you will not find a 100% compatible donor for the bone marrow transplant, if you find that donor, you will not get over it, and if you do, you will relapse”. Come on, opportunities like you see none, but we were used to fighting, we had a tour, incredible training. We said: "Let's see, what percentage is there?" And they told us: "20% of getting ahead." We told: "How do you know that my son is not 20? What if we arrive and he survives?" and they told us "No.We don't know it, so let's go for it, because we don't already have it in our hands”. And that's how that night in the solitude of the room, with the pi-pi-pi of the machine, it occurred to me to open the Instagram account.
"And that's how that night in the solitude of the room, with the pi-pi-pi of the machine, it occurred to me to open the Instagram account."
Was the “José María influencer” born there?
M-. You are right. We were there, with the beeping of the machine to which it was connected, in the dark, at that moment in which parents reset and tried to assimilate everything that has happened to us during the day. She tried to digest the recommendation to go to palliative so as not to make him suffer. We had decided that we were fighting for life, we thought that José María's life deserved to be lived, and then I remembered a phrase that one of my daughters, the eldest of them, had been saying to me: “Mom, open an Instagram account. Mom opens an Instagram account. And it didn't seem necessary to me, I said. "If there are many people already involved there who already teach their children, it is because I do not have...", I had no desire or need. But at that moment I said: "What can I do in this situation that José María is in? Well, look for a 100% compatible donor", because none of my 6 children was a compatible donor, which is already rare, because siblings are usually the best, but not in this case. And then I said: "Well, you have to open an account." I put a whatsapp to my daughter: "hey, I want to open an account, what do I have to do?" "Download the application" "Okay, that's it, now what?" I mean, I had no idea. "You have to put a name." And me: "what name?".
And then he told me: “Mom, you always say to be happy: put a Down in your life”. Said: “Well that, put a Down in your life”. And... that's where the name comes from.
And it was the people, so generous and so good, who began to launch it into the world. I was in the hospital stuck in that room and sometimes I came home, showered, and left again, that is, my life was not about going outside. But people began to move the account, they passed it to each other and then they began to go to donate bone marrow. They sent me the photos of the arms donating at that time, it was impressive. Marrow donation is very important, it saves lives. And it is a very simple thing to do. We should all be donors, because really the only thing you do is give life to another and it doesn't take it away from you, they don't take a kidney, they don't take anything... you regenerate what you give. It is the only organ donation that later regenerates, and they also do it to you as if it were an analysis, it doesn't even hurt. Just think that there is someone who needs your marrow, that maybe you are his DNA twin, and you are the only one who can save his life.
We started the treatment, that hard one that they had told us, and in the middle of the treatment our oncologist appeared, whom I adore, and told us super excited: "We have multiple donors, 100% compatible." What seemed to be impossible, José María had achieved, and with him many people, because the donation is not a donation for one person, the donation is universal. You are not going to donate to so-and-so, they put you in a registry and the doctors look there, when someone identical appears, the alarms go off.
Marrow donation is very important, it saves lives. And it is a very simple thing to do. Just think that there is someone who needs your marrow, and you are the only one who can save his life.
In other words, it can be said that the donor came because of the appeal of the networks.
M- I am convinced, because the donation that year was so large that we have not yet had an equal donation, nor had there been 5 years before... Everything is documented in Redmond, in the Bone Marrow Donor Registry.
Of course, this is a very positive aspect of the use of social networks..
M- Sure, this will have served a lot of people.
We were happy, but history continued its course. Shortly after, the oncologist arrived and she told us: "Teresa, the leukemia cells have reappeared, nothing we are putting into them is useless." And José María was wearing a leash, he was on morphine, his tongue was burned, his buttocks, it was a pure sore on the inside, but it was useless. The next thing was palliative... that was a very hard moment in our lives, that day I couldn't breathe from the pain...
Also, I got the feeling that I was deceiving people, that I was asking this for my son and, despite such generosity, my son would not get ahead. At that moment, my husband, who has a very good head, told me: "Teresa, as long as it has served just one person and saved their life, all this movement and work that we have done has been worth it." I thought: "Yes, but not for my son." At that moment I was very selfish, but what a great thing to think as he had told me, it's true, it's like that.
We decided to wait and think about how to tell our children, we always told them everything, but this was very hard. We waited a few days for us to be more serene and not cry at the first chance, and we were lucky to be able to wait, because the oncologist came again and she told us: “Teresa, we have an experimental treatment called CART-T Cells. And you have to decide, but now, because you would have to be in Barcelona, they only teach it there, you have to decide now and you have to go…”. Well, this was a Thursday, and on Monday or Tuesday we had to be in Barcelona.
Another unexpected twist.
M- Unexpected, but of course, it was a door to hope, we didn't know what was going to happen, maybe it wasn't working for him, maybe it wasn't going well, it was an experiment, it was very advanced, but it was an experimental treatment. I thought: my God, blessed experiment, blessed research, how important is research, if it weren't for the research, because others bet on it, because others put up the money and others put up their time, my son José María would not be there. here and like him, many others.
And we went to Barcelona, we started the treatment... we were living in Barcelona for two and a half months, which were very hard, because we didn't know if he was going to live or not, you could die in the treatment. The treatment consists of taking cells from your immune system, which are cells called T lymphocytes, and genetically modifying them to turn them into weapons to kill directly at the target, leukemia, although they also attack B lymphocytes. which José María right now does not generate defenses in the viral, but he is alive.
"If it weren't for the investigation, because others bet on it, others put up the money and others put up their time, my son José María would not be here and like him, many others."
María Teresa, you have told us: Childhood cancer – rare disease. Is that sentence like that?
M- Yes. When you experience something like this, you get to know many associations and foundations that do it very well and that are so good, to be able to carry this out. But one of the things that strikes you is that there is no budget for childhood cancer research. The budget is “zero”, and that zero is originated because the WHO considers childhood cancer a rare disease. But if cancer is the first cause of death among children in Spain and the second in Europe, why is it considered a rare disease? Something is wrong, something is wrong. Don't our children matter? Is it that the lives of our children have no value to be able to investigate?
I believe that it is something that must be changed, I was urged to open an association against childhood cancer called Together against Childhood Cancer. There are certain things that have to be changed, that have to be fought for, that may not be very political or administrative, to put it in some way, but that save lives, because if there were an amount allocated, many of the things that are in process would be much faster, we have seen it now with the coronavirus.
Together against Childhood Cancer, what is your role?
M- Well, it was born in 2019, although later with the pandemic... actually working, it has been working since 2021. It is an association made up of parents from the oncology world that what we want is to contribute our bit to eradicate childhood cancer. For this we work as with three legs:
Join the join forces to achieve important thingsFor example, this seems to me to be something important, between associations, entities, oncologists, the world of science, researchers, we have to go in the same boat and row in the same direction. Many times everyone works separately, and it is important to row at the same pace to move faster.
The second thing is the attention to diversityOf the 70% of children who finish an oncological process, 70% come out with a disability, it can be physical, it can be intellectual, it can be sensory, sometimes all together, and that must be addressed, these people do not they can stay in "nobody's world", it cannot be: "Well, at least you're alive." Yes, that is the starting point and now we are going to see how we have to do it. Or during the process, if it is seen that that person could lose an eye or a leg, we will see how we can do it and then move on. We are going to provide the means so that this person does not later have a cognitive problem or a disability, due to chemotherapy and radiotherapy, due to the entire process, not due to the disease itself. 70% is very large and you have to help these children and their families.
and then that attention that certain families require for some specific need and that it is not yet included in the rest of the associations, because I believe that we should not step on each other, the associations must be in the gap where there is nothing, so that they solve the problems as soon as possible but we must support what the others are doing and if they are doing well, it must be said, let's support them, even if it is from our association. Because the sooner we put an end to it, the better, that there is no work left for oncologists and they have to reinvent themselves.
How many things in these nine intense years. A big surprise when José María arrives, suddenly unexpectedly at the age of 3 the turn of the cancer, then the experimental treatment. Then found such an important and necessary association and start rewriting medical protocols. Everything this kid has done!
M- Of course, I always say, he doesn't do the interviews, I do them, but really when I say that I'm the secretary, it's that I'm the secretary, I'm the one who works but he's the one who transforms, and he does it in such a way that he is the first child with Down syndrome who has received CAR-T cells in Europe, and as a result of him it has been seen that this treatment is much less harmful than bone marrow transplantation. As a result of his case, the protocol is going to be changed, we are working on it right now, so that when they relapse the first thing they are given, without having to go through a bone marrow transplant, is this treatment. Because there are many children who die along the way, that is, the figures that they told us at the "Niño Jesús" Hospital in Madrid are real, they didn't tell me for nothing, but because they truly stay on the road.
So if a treatment like CAR-T cells can save their lives, let's do it sooner. Thanks to the case of another friend of ours called Mauri, who is in the Canary Islands and is in this situation, I think we are about to achieve it. We all have to be together, and together are the oncologists, are the researchers, are the person who brought the CAR-T cells here to Spain. Everyone thinks and believes that this treatment is the best for people with Down Syndrome. This makes you totally change your perspective, your way of seeing life and say: "I can't sit idly by", I am not a person who says: "Okay, that's it." It's just that this is here for a reason, I don't wonder why they happened to me, but rather, what is this for? And then what comes out comes out.
I continue to learn from José María, I believe that we all learn from him as he grows, he teaches us new things. Now I also direct a radio program on disability, it's called “Dale la Vuelta” and I think: my God, how lucky I am, I mean, thanks to the fact that I am the mother of José María, they have called me to direct this program, in which I am learning from the people who come to tell their lives. Now I go down the street and think: what a more interesting life this person and this other one must have, because we all have an interesting life, is that if we interviewed everyone, everyone has an interesting life although not themselves It seems to you, everyone has something special, everyone has a cross. José María has made me see the richness of people, I now see people and I look at them with joy thinking: “how special you are”. And that has made us see José María.
Can it be said that there is a design, is there a plan for everything that José María was going to do in your life? Who was going to tell you that you were going to direct a radio program, to found an association?
Yes, but you also have to want to see it, I always think that you have to want to see the good part of life, you have to do a little bit of yourself too. And then I am a person who believes in God. I say this openly, because when I have had pain, which as you have seen I have had a lot, I have realized that she was accompanied, I have never been alone. I have many friends who have gone through the world of oncology, even who have lost their children and perhaps do not believe in God and many times they told me: "I envy those who believe", because they need to feel loved, never feel abandoned and feel held by the hand... that gives a peace in full pain that is indescribable.
I always say that the best social network, the largest that exists is the Communion of Saints, is that network of prayers from all over the world praying for someone, that does not fall on deaf ears. When I have been bad, bad, that I have not been able to even raise my eyes to heaven, others have prayed for me. I have noticed it physically, of being sunk and suddenly saying to people: "please, let's pray" but I can't and suddenly feel a force after a few minutes. That's when I have to say: "This is clearly not mine, I have no merit, this comes from others." I am convinced that José María is here thanks to so many people who have prayed and devoted themselves to him. Of course science has its important role, there is a very Spanish proverb of "begging God and giving with the mallet".
This summer you have been with the Pope.
M- Yes, we have been lucky. We had been married for 25 years, so we prepared the trip ahead of time, we wanted to go to Rome with all our children. And my husband came up with the idea of writing for the Pope's audience on Wednesdays. A lot of people go, but he told me: "I'm going to stick around a bit, I'm going to tell our story." And then he sent an email explaining that we would love to greet the Pope, but come on, without thinking that they were going to say yes to us. He sent all the medical reports so they could see that we weren't making it up, they answered us and said yes. And there we went, we didn't know very well, because they say yes, but we didn't know very well if it was to be in the general area or not. In the end they put four of us in the place where you are going to greet the Pope, the rest had to stay in the general area. It was very exciting because it was not something we knew for sure, and for us it was a gift, for us he is a very important figure and for whom we pray every day. We went up with José María, who was the protagonist, and with Ignacio, who was the other son with a disability. José María went out of his way, I got the feeling that when he looked at José María he was looking at Jesus Christ himself, that is, he struck me because of how he looked at him and how he kissed him. It was very shocking.
María Teresa, to finish or to leave a final message, what would you say to a woman like the one you were at a time when a child like José María suddenly arrives or your son is diagnosed with cancer?.
M- Well, it's not the same, the messages are not the same, with the disability I would tell them to let themselves be surprised by life, not to put ceilings on themselves like I did, or limit themselves to thinking, but to be excited about each step that she takes and that she learn from him, because he was going to teach her much more than what she is going to have to invest in him and what she is going to have to teach her... much more, and that love is so infinite and so great, the love they give, in any of the disabilities, that she will feel highly rewarded, that she will think that her life is much better with him than without him.
To a person who begins a diagnosis of a serious illness, in which your child's life can be at risk or that is a disease that is very difficult to bear or to live with, I would say that you cannot do it alone, let yourself be helped, that many times we do not know how to let ourselves be helped. One of the things I learned is to ask for help, we usually tend to help but we don't know how to receive it or ask for it, that he let himself be helped and that he value every minute he is with that son, that he not get lost along the way, in the dimes and Tell the doctors, the things that happen, because we never know the end, I don't know how long my son José María will live, but I know that as long as he lives I want him to be happy, and I want to enjoy That happiness, don't lose it, don't lose that happiness that it transmits even in pain.
Maria Teresa, thank you very much from the heart. Thank you on behalf of Alawa and thank you on behalf of so many people that your son is touching every day through social networks, through everything you do as "his secretary" and that is saving our lives. That is what this section is about, this beauty that your son, you and your family, squander in abundance and that heals our souls. Thank you very much
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