Family

"My son with Down syndrome and leukemia transforms hearts."

Teresa Robles, a mother of a large family with seven children, the latest, José María, with Down syndrome and leukemia, and another son with ASD, Ignacio, manages the Instagram account @ponundownentuvida, with more than 40,000 followers. He talks to Omnes about the transformative effect of people with this syndrome, and about when strength fails.

Rafael Miner-October 17, 2021-Reading time: 10 minutes
Josemaria

Photos: ©ponundownentuvida

Every year in October, the Down syndrome awareness month, in order to direct the gaze of society towards people with this syndrome, making their dignity and abilities visible.

Omnes has been giving more and more space to these people, to trisomic people, with several reports on the father of modern genetics, Jerôme Lejeune, the latest in March.

Today we interview Mª Teresa Roblesa mother of a large family, with seven children. José María is the last one, he was born with Down syndrome and also has leukemia with a serious immunological problem. Teresa speaks of the transforming effect of her son, of children with Down syndrome and of how "you have to transform society to reach doctors".

Founder of the association Together Against Childhood Cancer (JCCI)Teresa is known for her Instagram account @ponundownentuvidawhich has a whopping 40,000 followers. And he tells anecdotes. For example, two Muslim girls "who were going to pray for José María because they were praying to the same God, because we are asking the same God. That touched me very much. Teresa speaks of the power of prayer, "which is physically noticeable", of "the best social network, the Communion of Saints", of her husband and children, of Opus Dei.

̶ Before talking about José María, tell us something about Ignacio....

We have another son with a disability, the fourth, Ignacio, with a mild intellectual disability, who also has ASD, autism spectrum disorder. Sometimes these children are more difficult to see. They are the forgotten ones, because physically they are not seen, as is the case with a child with Down syndrome, and they are less understood. Sometimes you suffer more with them than with a person with Down syndrome.

̶ How is José María now? His battle against leukemia...

He is stable right now. We are on an experimental treatment, since 2018, and his autoimmune system is malfunctioning. He doesn't have viral defenses, he doesn't generate them. We have been taught to put gamma globulins, his defenses, at home once a week. Once a month we have to go to him for analysis and tests. And then we have to touch up the immunological part to give him the needs of his autoimmune system. He is treated at the Hospital del Niño Jesús for oncological issues, and at La Paz for immunological issues.

̶ Teresa, you have ever spoken about the transforming power of José María, can you explain it?

I call it the José María effect. It is a brutal effect that it has, and I think that all people who have Down syndrome have it. When we are around them, without creating violence, without violating anyone, without judging, they are transforming their hearts, they are transforming their looks, and with it their hearts.

Let me give you an example. We were on our way to the hospital, in the back, where oncology usually goes in, so as not to meet a lot of people. And the cars and delivery trucks were coming out. And one of them was coming very fast for a hospital area where people pass through. I looked at him with a 'murderer' face, he looked at me with a 'murderer' face [M. Teresa laughs as she tells the story], we challenged each other with our eyes, and suddenly I realized that he was looking at José María, and his face changed.

José María was smiling from ear to ear, and waving at him, as if he was the most important thing in the world. He was very amused, as I was. It completely transformed him, he waved at him, rolled down the window. The boy left so happy, and the man left so happy. And I thought: what a guy, he completely changed our morning. We were angry each in our own way, and we left so happy. He transformed his morning and he transformed mine. He made our day. There's nothing like starting the day cheerful. It's an effect we generate all around us.

Without violating anyone, without judging, they are transforming hearts, they are transforming their looks, and with it their hearts.

Mª Teresa Robles

̶ How is that account on Instagram? How did it come about?

The truth is that I had never been interested in social networks. When José María relapsed, there were two possibilities: to go to palliative care or a bone marrow transplant. Palliative care is already known, and we were advised not to take the bone marrow transplant, because he was not going to find a one hundred percent compatible donor, he would relapse, if he got it he was going to die in the transplant, and death is very cruel. Everything was going to be very painful.

We bet on life. We realized that in the background there were some thoughts like: "he has already lived enough, we have done enough, being a person with Down syndrome we are not going to make him suffer more"... There was no malice in what was being said, but we did not appreciate much value for the life of a person with a disability. They encouraged us several times, and told us that if it was their child they would go to palliative care, that they would not make him suffer more. But we said yes to life and bet on it again. The "no" we already have. If we go to palliative care, he will die in two months, if we go to transplant we will accompany him on his way, and we will see what God wants.

In that situation, that night, I thought: what can I do in this situation? What can we do? We are going to start a bone marrow transplant, but nobody believes in it. And it occurred to me that, in order to transform society, which is what we are always in, society has to take charge of what is happening to José María, the doctors too. I believe that society has to change in order to reach the doctors. This was one of my goals. And the second one, to get bone marrow for José María, bone marrow for everyone, because bone marrow surgery is universal, it is not for one person.

̶ And it ended up being called @ponundownentuvida....

Then I thought "I'm going to launch it on the networks, and the more people there are"... We were told that it was going to be almost impossible for us to find a donor. Then I remembered some words from a daughter of mine, who was after me to open an Instagram account, and I thought: it's time to do it. My daughter said "mom, download the app", and I said "what name should I give it?" And my daughter commented: "mom, you spend all day saying that if you want to be happy, put a Down in your life". And I said "it's true", so @Ponundownentuvida.

I opened the account, people poured in., It was the year (2017) in which there have been more donations in I don't know how long, they had to open the schedules of the hospitals where bone marrow is donated because they couldn't keep up. José María started with cancer in 16, in 17 he had the relapse, in September we started the marrow thing, they told us that they found multiple donors one hundred percent compatible (according to them it was impossible), although they could not tell us how many, but they insisted on the "multiple".

So, José María became resistant to receive it. For a bone marrow transplant, the marrow has to be clean, and they give you chemotherapy. And Jose Maria's cells were so smart that they became resistant to chemotherapy. And they told us he couldn't go for a transplant. But I already had an army praying on Instagram, there were at least ten thousand people (now there are more than 40,000).  

̶ Do you know anything about that praying army?

Imagine ten thousand people somewhere - that's a lot! I don't gather them in my living room. Well, all of them praying. There are even people who wrote to us: look, I am not Catholic, I do not believe in God, but I prayed when I was a child, but I will pray every night for your son, to the God you believe in. During the Week of Prayer for Christian Unity, called by the Pope in January, two Muslim girls wrote to me to tell me that, since it was the same God, they were going to pray for José María because they were praying to the same God, because we are asking the same God. That touched me very much.

And a few days later, while we were assimilating the news, because we had not yet told the news at home, because we did not have the strength, the oncologist told us that there was a clinical trial in Barcelona, which we do not know how it is going to work. It is working very well, but José María would be the first child with Down's syndrome in Europe to receive it, we do not know how it is going to go, but... And we said: Where should we sign? We moved to Barcelona, we spent two months living there, and receiving the treatment, which was very hard, he was in the ICU for a few days, and we came to Madrid with the treatment, and a follow-up with which we have to go once a year to Barcelona. The day-to-day follow-up is done here, at the Niño Jesús. But they give all the information to the Hospital Sant Joan de Déu. In Barcelona he was very serious for a few days, but he came through, the treatment took effect, and we have been giving him a gift for three years.

Two Muslim girls wrote to me to tell me that they were going to pray for José María because they prayed to the same God.

Mª Teresa Robles

̶ This is very personal. How has the Christian faith, the Catholic faith, and the message of Opus Dei helped you? Where does your strength come from?

I am going to tell you what happens in such a big process, as is the oncological process of a child. When a child's life is at stake, it is unnatural. Strengths often waver. There are many peaks, when you get bad news and good news. Bad news is like burning cartridges, one less chance that your child will survive. Of course, that is very difficult to assume. I am a person of faith, I am lucky..., that is a gift, I realize in this process that it was a gift that God gave me, it is not something that you do, well, I am going to have faith, but it is something that God gives you because he wants to.

̶ It is a gift, a gift.

Yes, but you never realize it more than when you really need it. In all that process, God was my support, but during many moments, I could neither pray nor pray. I am lucky to be a member of the Work, and then my group, my family in Opus Dei told me, when I told them that I couldn't pray, "Don't worry, we will pray for you. That touched me. At that moment, I felt part of a family, I felt loved, and I really felt the power of prayer.

It is true that maybe I was not able to pray in those moments. When I was asking people through social networks to pray for me, when they told me that I could not go to the transplant, it was one of the hardest moments of my life. I thought: my son is dying. There is nothing more I can do. I have already done everything I could, the doctors too. At that moment when you think you are dying, I put out a message right there: I got everyone praying, my whatsapp groups, my Instagram groups, everyone. People turned so much, that after a while I noticed a superhuman strength. Are we superwomen? No, the power of prayer is physically noticeable. There are moments when you feel it not only morally, but also physically. It makes you get up, move forward, and with renewed strength.

It is true that we all have like a lion inside us, that we were born to fight. And it is true that your strength is multiplied by two when you put it in the Lord. This is a reality and an advantage that we have over the rest. I have lived this in my flesh, and I have experienced it physically.

Some who do not believe in God fight like me, like lionesses, but it is true that it seems easier for me when God leads me, when I put everything in Him. Many times I have not even been able to pray. I say this because there are people who get overwhelmed thinking that they cannot pray and, if I do not pray, God will not cure my son. That is not a problem. There are many people who already pray for you. God is not watching to see when you don't pray.

The best social network is the Communion of Saints. The biggest and best social network. I say it everywhere I go. People have to keep hearing it, what the Communion of Saints is all about, it's awesome.

̶ Perhaps the time has come to talk about other people in your family. The brothers of José María...

When there is an oncological process of a sibling, the family turns around. Normally, there is a lot of fear, but also a lot of pain and suffering, which each one experiences in a completely different way. And you also have to be very delicate with each one, because there can be incomprehension because of the way someone in the family expresses this pain. I think we have to respect each other a lot, and we have to love each other a lot in those moments, to let each one express themselves in the way they need to.

My husband. Let's see. I have been my son's secretary in social networks. I'm not the protagonist. I always say I'm the secretary of a large account right now, with more than 40,000 followers [on Instagram], and I give lectures, but because I talk about my son, it's not personal.

In the family it is necessary to be very delicate with each one, because there can be incomprehension because of the way someone of the family expresses himself/herself in this pain.

Mª Teresa Robles

̶ You are the spokesperson...

Now they call it community manager. I am the secretary, as they used to say. José María's mission is to change people's eyes, to change people's hearts. To make a better world. And the only thing I do is to transfer it.

̶ Your husband.

My husband's role is fundamental, because if my husband were not behind me, I would not be able to keep the account or do what I am doing. It is true that he had neither the strength nor the will to carry out this; it is a reality, we are not all in the same role in the family. I believe that everyone has a role to play and they are all very important. My husband is a key piece in my son's recovery, my son adores his father. It is true that maybe I don't mention him so much, because he doesn't like it. We have to respect him. I take him out in the pictures, because he is an example, and I am proud of his role as a father and as a husband. He is not an activist of the account, because he is not attracted to social networks, but he sees the good that is done and supports it one hundred percent.

- Your children suffer...

My children have suffered a lot. We thought we had it all under control, because there was always one at home. When I was in the hospital, my husband was here, and vice versa. But the reality is that we were little, because logically we were in the hospital a lot, and the one who was here, with his head there. Although we thought we were aware, in reality they have lived two years taking care of themselves and the house. Then we have to recover those children, heal those wounds that each one has, and clean until the pus comes out. And to give that form of family that the rest of the people have. And that is difficult, it takes time, dedication, a lot of love, a lot of patience.

̶ Two years of pandemic - have you passed the virus?

I went through it, very seriously, and then my son José María was in the ICU as well. José María doesn't miss a thing [he says with good humor].

- Anything else you would like to add?

Yes, I immediately began directing a radio program for the disabled on Radio Maria. It's called 'Dale la vuelta', and it's a program about disabilities. I start on the 25th, to see if it works. It will be on Mondays at 11:00 a.m., but every two weeks.

José María's mission is to change people's eyes, to change people's hearts. To make a better world. All I do is move it.

Mª Teresa Robles
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