Through the Siblings project, the NES program also provides special support to the siblings of children with cancer, who are often overlooked. "We want to offer a dedicated space for young people who have a brother or sister with a serious illness, a space where they can feel heard, share experiences with other young people who have gone through similar situations, and, above all, enjoy leisure time and a break," explains Yolanda Valle, NES coordinator. The project organizes a wide variety of activities, from beach volleyball days, board game afternoons, movie nights, and museum visits, to more creative pursuits such as writing a rap song or designing their own comic book with the support of professionals in each field. "The goal is to create a peer support network, a meeting point where they can express themselves freely, have fun, and strengthen their sense of belonging and well-being," Valle emphasizes.
Ona after cancer
Overcoming childhood cancer often involves a series of challenges and aftereffects that can limit certain activities or generate insecurities, and that is why transition programs to adulthood are needed.
BarcelonaOna Lloveras was born with Shwachman syndrome, a rare inherited disorder that causes the pancreas and bone marrow to malfunction. She was diagnosed at the Parc Taulí Hospital in Sabadell at the age of two. Until she was six, Ona was frequently hospitalized for neutropenia, anemia, bronchitis, and various infections. At age 12, her bone marrow began to fail, leading to severe myelodysplasia, a type of pre-leukemia. In April 2013, the family was informed that the only solution was a bone marrow transplant, as chemotherapy would not resolve the problem in her case. No compatible donor was found, and so, on May 27, 2013, they opted for an umbilical cord blood transplant. Afterward, Ona—who was 13 at the time—spent many months hospitalized and isolated at Vall d'Hebron Hospital, first due to the transplant itself and then because of intestinal and skin rejection and the numerous infections she faced. "After a lot of things I don't want to remember anymore, I was able to go home," she explains now. However, she clarifies: "Home care didn't prevent a lot of trips back and forth to the hospital and having to take a lot of medication."
The young woman, now 25, had regular checkups at Vall d'Hebron until three years ago and currently, due to Shwachman syndrome, has minor checkups at Parc Taulí Hospital and only takes vitamins and hormone pills. "I'm doing very well!" she exclaims happily under her mother's watchful eye. Rosa recalls that, initially, it was very difficult for her to accept that her daughter suffered from severe myelodysplasia at a time when her syndrome was more or less under control: "For a while, it was as if someone else was going through it all, and I was watching from the outside." Then, she acknowledges that everything unrelated to her daughter faded into the background. "You forget everything around you: parents, siblings, friends, family... even my other son, Gerard. Nothing else matters, and you live only for your daughter: what will happen to her, what will people say to you, what will you encounter..." she explains.
Normality doesn't arrive overnight.
Once a cancer patient is discharged, people think that normality immediately resumes, but that's not the case. They aren't the same people they were before the illness, and often they don't feel prepared to face the educational, professional, or social challenges that arise afterward. "To begin with, normality takes a long time to return," Ona points out, emphasizing that you always encounter people who don't know how to treat you: "Some treat you like you're made of porcelain, others see you as a problem... It's hard to have the people you knew before back by your side." The young woman acknowledges that the challenges also become more complicated, and it takes a long time to be able to do things again.
As Arantxa de Lara, head of the care department at the Villavecchia Foundation, points out, "overcoming the illness doesn't necessarily mean the end of the process, but rather the beginning of a new stage full of challenges." The most common fear is relapse, since, after months or years of treatment, any discomfort can trigger anxiety that the illness will return. De Lara emphasizes that this fear is "very real and difficult to manage." She adds that many patients have also undergone physical changes, which often affects their self-esteem and relationships with others. "They need time to rediscover themselves and build a new identity," she notes. After spending so much time in the hospital or at home, some find themselves disconnected from their surroundings, and, for example, returning to school, reconnecting with friends, or resuming activities can be difficult. Therefore, it is essential to offer them comprehensive support: psychological support, educational guidance, and medical care, as well as listening to them, giving them a voice, and providing them with space to express their feelings. Fortunately, the survival rate for childhood and adolescent cancer, averaging 82%, is increasing both at the state and European levels.
Fear of getting involved again
Socially, many patients explain that they find it difficult to reconnect with others. "They've gone through experiences that have forced them to mature quickly, and they often don't recognize themselves in the typical concerns of their peers," De Lara points out. This is why the Villavecchia Foundation launched the comprehensive support program "You Are Not Alone" (NES) in 2012. It's aimed at teenagers and young adults between 14 and 19 years old who have survived cancer, as well as their families, and its objective is to improve their quality of life by helping them cope with the aftereffects and providing them with greater well-being and opportunities. Ona and Rosa learned about the program at Vall d'Hebron Hospital during Ona's stay. What convinced them to enroll the young woman, Rosa explains, was "above all, that there were many other young people like her, as well as a great team of people who could help her open many doors, since she was always confined to her home."
![Ona suffered from cancer at the age of 12.](data:image/svg+xml,%3Csvg xmlns="http://www.w3.org/2000/svg" viewBox="0 0 1 1"%3E%3C/svg%3E)
The range of activities offered by the program is very broad, encompassing everything from biodanza to outings to places like CosmoCaixa, the Egyptian Museum of Barcelona, and the Olympic and Sports Museum, as well as participation in art workshops, drone workshops, and the creation of interactive animations. "Among the more experiential activities, we've had a boxing and yoga session, DJed with professional DJs, spent afternoons at the beach, and even enjoyed a summer camp at a rural house," says Yolanda Valle, the program coordinator. These activities aim to create spaces "where young people feel safe and free to express themselves, share, and network with other young people who have had similar experiences, without fear of judgment," Valle explains. As they participate, they gain self-confidence and self-esteem, discover their strengths, and learn to recognize and express their emotions more freely. "Shared experiences also help them improve their relationships, gain empathy, and build healthy and positive bonds," adds the coordinator.
Through the You Are Not Alone - Children's Program (NESI), the Villavecchia Foundation enabled 12 children under the age of 10, all cancer survivors, to benefit last year from 11 activities specially designed for them. These activities, held once a month, range from adapted stand-up paddleboarding to cooking and writing workshops. The goal, explains Claudia Pratdesaba, head of activities for the Foundation and the program, "is to create leisure spaces where children can be children, play and enjoy themselves, while we work on their socialization and relationship skills." For families, she continues, "it's also a safe space for mutual understanding: there's no need to explain anything, a look is enough." The Foundation is firmly committed to ensuring access to leisure activities throughout the year, "including in the summer," Pratdesaba emphasizes. That's why, when school ends, through the NESI program, they promote an inclusive summer camp, adapted to the needs of each child, "with the aim that they can enjoy a summer like any other boy or girl," concludes Pratdesaba.
Patient empowerment
As part of the NES program, Ona had the opportunity to go to Disneyland Paris, a trip she describes as "truly magical." She also went to Andorra, where she skied for the first time. The program also helped her and her classmates learn to navigate the streets independently, use public transportation, and overcome their fear of asking for help. She emphasizes, "And it helped boost my self-esteem and confidence, since I felt different and very alone," recalls Ona, for whom meeting young people like herself and supporting each other "was essential." Although she is quite shy in her interactions—a shyness she attributes to the lack of empathy and support she experienced at school—and the lingering effects of her transplant and chemotherapy, Ona now leads a virtually normal life. "I still have gaps in my knowledge, which makes it difficult for me to understand things or means I need a lot of support with my studies, but I'm currently studying hospitality and catering, and I dedicate my free time to writing, designing, and illustrating, as well as singing in Japanese," says Ona, who also reveals that she has been pursuing her dreams for 10 years.
The dreams Ona is pursuing are the product of a process of self-improvement she has worked on for the last few years, some of them accompanied by the NES program of the Villavecchia Foundation, which benefited 15 young cancer survivors in 2024. This is a result, Yolanda Valle points out, of the fact that each activity invites them to step outside their comfort zone, whether by getting around the city, trying new things, or making decisions as a group, "and this makes them feel more capable of facing the challenges of daily life and going through life with greater confidence and self-esteem." This reinforcement, which has also been implemented for the past year in the workplace, is through a new social mentoring program. In this program, each young person is paired with a volunteer specifically trained in mentoring. "This personalized support helps them find career direction, identify interests, and define future goals," explains Valle, who adds that, after this initial phase, they will gradually delve deeper into more specific aspects "such as resume writing, preparing for job interviews, and actively seeking training and employment."
![Iván y el Almira con el Martí y Gabriel.](data:image/svg+xml,%3Csvg xmlns="http://www.w3.org/2000/svg" viewBox="0 0 16 9"%3E%3C/svg%3E)
