Just for being a mother of seven children between 20 and six years old, the life of this mother would already be exceptional, but in addition the youngest, José María, has Down Syndrome and is in an experimental treatment for leukemia.
In order to ask for bone marrow donations and, encouraged by her teenage daughter, María Teresa created the Instagram account @ponundownentuvida, which already has more than 15,000 people who follow José María's day-to-day life, her tenderness, her strength and The story of this family out of the ordinary.
The impact that your Instagram account has had has been impressive. Where did the idea of creating it come from?
My son José María has leukemia since May 2016. We went with the protocol perfectly until August 2017, when he relapsed. My teenage daughter had been behind me for a long time for us to make an account in which people saw what the life of a child with Down Syndrome was like, so at that moment we launched it to tell what leukemia is and specifically in a child with Down syndrome. It was also because of the need to ask for bone marrow donations, which was the only way to save José María at that time, to get a 100% compatible bone marrow.
Today José María is 6 years old and we have celebrated it in a big way. Room decoration, we have dressed for the occasion, cake, gifts and all the brothers. I love how to blow the candle I was so happy A special birthday, we didn't know if we could celebrate it all together and here we are. We love you # sacalalenguaalsoplar # and we will correct it back # meencanta # birthdayfeliz #downaddicts #familiaunida #familianumerosa # t21 #cartTcell #cellulascart #immunotherapy #tengoundownextraordinary
Did you achieve that goal?
In the end, José María could not have a bone marrow transplant because he became resistant to chemotherapy, which was one of the requirements to do so. But although in the case of José María it could not be, it was a success, because people turned upside down, even famous people. There were more donations last year than in the previous five and that was one of our goals, in fact our slogan was: “Marrow for José María, marrow for all”. Now José María is following an experimental treatment with CART cells in Barcelona.
What you wake up a brother and breakfast is a luxury. And to show his love he gives him "puppy kisses". LOL. Not so liked by Enrique. But it is very difficult to get angry with him. Have a happy Holy Saturday #amordehermanos # t21 #downaddicts #tengoundownextraordinario #cartTcell #celulascart #stopleukemia
The love of his brothers is palpable through the photos and videos that you publish in your account, how does José María's illness affect the rest of the family?
The hospital admissions and the month and a half that we have spent in Barcelona with the treatment is a disaster for any family and, logically, at home everyone collaborates and takes care of the situation. In addition, what his brothers have with José María is not that it is love, it is that it is authentic adoration. What you see on the networks is the reality of my house and it is not because I have a disability (I have another child with a maturation delay), but that that disability has made us better. It has made us value people for what they are and not for what they have or for what they contribute, but for themselves. And that is something very big and that we would not have learned if it were not for José María. And we have to thank him for that.
"What your brothers feel for José María is not just love, it is adoration"You have children with difficult ages, such as adolescence. Does this exceptional situation help you to see things differently?
What we have won right now in front of the other parents of teenagers is that ours is much more bearable. The situation we live takes away nonsense, mature a little earlier. While they are teenagers, there is nonsense that no longer arises and with my oldest son it has been raised. It is normal because we have a different perspective on life.
Day 23 Looking at photos from 4 years ago I was excited. I still had not gone through any of the two bowel operations or the entire process of our already friend leukemia. I look and forward the differences and I remember the days of the beach, of the swimming pools, of the walks, of playing in the park with other children, of going to the park ... It takes so long without being able to make a child's life without illness that I had forgotten. I'm not sad, I'm TANNNNNN CONTENTS, I hope I know how to explain it well. I don't look at what he couldn't do, (that's a mistake) because he has done other things. And the most important thing we have been ENJOYING SO MUCH ... of an exit for the Retreat, of a few hours with the brothers, we have learned to value, that the hours with the people we want count ... Now I remember that "normality" again and I The tears jump to think that soon (we don't know how much, there is no date) we will be in the park with children, in the pool, in school ... And I get excited. How beautiful it is to dream when you are so close to fulfilling a dream. #friendsoffensesbaHasAncomodado #AverSiSuben #hoyOshehechadororollo #needed to tell #stopleukemia #vamosjosemaria #josemariatupuedes # T21 #cart #cartTcell #immunotherapy #tengoundownextraordinary
Recently, you shared on the networks a photo of your son telling him that his first tooth had fallen, but that for you it was very important because you did not expect to live that moment ...
In September, when the marrow transplant option disappeared, they told us about the possibility of going to palliatives directly with José María. It goes through your mind of everything except that you are going to live with your son the fall of his first tooth. All the children are special and the first time a tooth falls out of any of them, it seems wonderful and hilarious, but in that case it seems also a super gift to be able to live it with him. All the time I have with him is an extra. It is a gifted time and I have to value it and enjoy it minute by minute. Until now I had not realized that all children should be enjoyed. I now see my children differently. I enjoy my children much more than before. I have realized that sometimes I lost myself in nonsense and now nonsense is left aside.
"All the time I have with my son is an extra, it is a gift that I have to take advantage of and enjoy to the fullest"By taxi on the way to the hospital Sant Joan de Déu. That's how happy José María goes, having woken up very quickly. Today analytical review, hematologist and return to Madrid. The love with which they treat us in the hospital @sjdhospitalbarcelona is a pleasure. Luckily his brother is coming I can no longer with him #celulascart #cartTcell # investigation #stopleukemia # t21 #downaddicts #different abilities #tengoundownextraordinario
Mother's Day is celebrated today. People who follow you through the internet consider you an exceptional mother. How do you look?
I don't think she is an exceptional mother, much less. Any mother is exceptional for the simple fact of being a mother because they don't teach you to be a mother. There is no subject at school to teach you. You are a mother with what you have seen in your home and with what you learn with your own children because each one works in a different way. What I do see myself is very fighter, but I believe that all mothers when we see ourselves in this situation become courageous mothers, we get all the strength we have inside, that we have it although some mothers think they do not have it. I did not know that I had this ability, now I realize that we are all exceptional, only thanks to God not all of us have to be in such a limit situation to realize.
That's how happy the convertible starts the weekend. This car is a donation to the Akafi association of which I have already spoken to you and is delighting children waiting to be treated at the oncology day hospital. For a while you think you are the owner of the world. Thanks to the Akafi volunteers who are taking care of the children in the theater every day and accompany those who cannot leave the rooms. They are all wonderful people. Good weekend to all # yotodavianomehemontadoenuncapotable # Yesteyaloconduce #stopleukemia #cartTcell #celulascart #different capacities # t21 #research #tengoundownextraordinario
Why do you always say that if people knew what a person with Down syndrome is, we would all want to have one by our side?
Because what it gives you is much more than what you give it. A thousand times more. What he brings to the family, to friends, to neighbors ... I had only heard the negative, I had a distorted image like most people do. We do not have a real picture of what disability is and in this case of children with Down syndrome. It's a shame because If I had known I would have received him with much more love and more love and I assure you that it weighs on my heart because it does not deserve it. He was born that way and it is like that and you have to love people as they are.
Thanks Maria Teresa!
In Babies and more # Authentic: the campaign that shows people with Down Syndrome as they are, World Down Syndrome Day: 50 mothers, 50 children and an extra chromosome
