Experiences

Mariano Ugarte: "The illness of a child affects many people".

The illness and death of his third son led Mariano and his family to found the Pablo Ugarte Association. Through this Foundation, there are many people who, with their contribution, support research projects on childhood cancer and, in addition, advise and facilitate information and procedures for families in similar situations. 

Arsenio Fernández de Mesa-March 24, 2023-Reading time: 3 minutes

Photo: Pablo Ugarte ©Mariano Ugarte

Mariano is a captain in the Spanish Navy. He misses sailing, something he hasn't done for ten years, but he is immensely happy. He has been married to Dori since 1986 and together they have five children: Dori, Mariano, Pablo, Quique and Marta. The third, Pablo, is waiting for them in heaven. 

Pablo was born in 2000 and passed away in 2010. "He was a very normal kid. Very handsome, animated, very lively". 

One day, Pablo began to feel pain in his hip. He was diagnosed with a bone tumor: Ewing's sarcoma, which, in case of relapse, has almost a one hundred percent mortality rate. Both he and his wife said: "It's treated, it's cured and that's all there is to it." They handled the illness phenomenally well, in good spirits. 

The child continued to attend school and missed friends in the seasons when he was unable to attend.

Mariano was convinced that Pablo would overcome his illness. He prayed and was sure that, with the help of prayer, Pablo would be cured. "But salvation is another, it is not centered on the material."he notes. Pablo's illness became complicated and he died in Madrid a year and a half after his diagnosis. "When Paul was about to pass away, I would touch and caress him thinking: I am touching the body of someone who is going to be with God shortly."Mariano, who confesses how he "losing a loved one, a child, helpless, who you've been telling is going to get well, it's hard." 

The moment of his death gave rise to great inner peace, because they knew that they had done everything possible and that their son had been accompanied. 

Mariano does not forget the immense affection he has received: "The Armada, friends, colleagues, acquaintances, neighbors of Colmenar Viejo, everyone got involved. A child's illness affects not only a few but many: the school, soccer, theater, judo, the neighborhood. Everyone feels the disease as their own", he proudly confesses.

His eldest daughter was 14 years old when Pablo passed away. "We didn't give them a chance to think about it too much or to fall apart, and two days later they were all in school, with no chance to protest. We had to get on with life, Mariano assures. 

He recalls how, in Paul's last days on earth, the doctor told them that there was nothing to be done: "I was not able to do anything.When I got that news I thought he was joking, because I saw my son looking phenomenal."

This "non-stop" was what made him turned on the light bulb: "I couldn't stand still.". After Pablo's death he asked the oncologist what they could do to support research projects. This led them to a doctor who did research in a different way and they created a group of people to support this research. "In two days 400 people showed up and we couldn't just send money, just like that, to an investigator." Mariano recalls. Thus was born the Pablo Ugarte Association, through which this money is channeled and they support childhood cancer research projects. Pablo passed away on November 27, 2010, and the first meeting of the foundation was on Sunday, January 16, 2011, which coincided with his birthday.

Since then, the Pablo Ugarte Association has been growing, helping research in all aspects. Talking to parents of sick children, Mariano tells them: "I'm not a psychologist, I can give you a hand, tell you my experiences, tell you what I've been through". Try to help them and make them see the possibilities. They have 29 research projects throughout Spain. "We support them in many ways. Guiding them on where one tumor or another is best treated or if they need second opinions. We have a good group of doctors who give them their opinion. We have also been able to expedite appointments." says Mariano.

When children come from places that do not have referral hospitals, they talk to the doctors and they receive them as soon as possible. Many people participate in the Pablo Ugarte Association. They are transparent with what they do with their money, explaining who donates and what the money they receive is used for. "We enjoy great confidence from the people who belong to this precious initiative." Mariano points out.

A family whose suffering has not blocked or paralyzed them, but has served as a stimulus to help so many others. I'm sure Paul is looking down proudly on them from Heaven.

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