Beth's family, two years after her heart transplant: "We've learned to appreciate the little things."

BarcelonaSeeing Beth again is thrilling. With a vibrant gaze and an infectious smile, she's already talking nonstop, goes to the pool, and plays with Berta, her younger sister. The ARA has followed her case since, at a young age, she had to spend 16 months in the pediatric ICU at Vall d'Hebron (one of the longest stays to date in this center's unit) awaiting a heart transplant. After surviving eight months connected to a ventricular assist device, Beth finally received a new heart, a journey filled with hope, fear, and uncertainty, which was successfully completed. It's been about two years since that "start over," and the family remains tirelessly dedicated to meeting the needs of the little girl and also those of Berta, who has become her sister's greatest inspiration. For the four of them, the best summer possible is simply being together, being together, and being well.

Caring for a new heart

"Mealtimes and our daily life revolve around Beth's schedule," explains Sara Batllosera, her mother. Punctually at 7 a.m. and 7 p.m., the little girl must take immunosuppressive medication that "lowers her immune system so she doesn't have a heart attack." An hour before and an hour after taking the medication, she can't eat anything and must also drink as little as possible. This medication will be "forever," adds Gerard Badosa, her father, who recalls that they left the hospital "with 29 doses of medication," which they have now been able to reduce to seven.

Controlling viruses is one of the biggest challenges the family faces every day. The goal of Beth's medication is to keep her immune system at its peak so it doesn't attack her new organ, but also to keep it capable of fighting off infections common with age. Despite the treatment, six months after the operation, the little girl suffered a major setback. "She contracted the mononucleosis virus and it created malignant cells that required us to perform practically oncological treatments that seriously unbalanced her immune system (...) It took us a lot to fight it, but now it seems we have it under control," says Sara. "Furthermore, we were hospitalized, and she had to be on oxygen because this treatment affected her lungs," adds Gerard. "Oh, and that's why Berta was born in Barcelona, because we were hospitalized! (...) We ended up having a scheduled C-section so that someone could be with Beth, while Gerard stayed with me. Anyway, it was a show!" Sara recalls.

If the summer remains calm and Beth doesn't get sick again, she'll probably be able to start school in September. "Because she'll be in contact with so many other children, we're especially worried that she won't pick things up," Sara admits. Meanwhile, during the school year, she's been able to receive support at home from a teacher assigned by the Generalitat (Catalan government), who has helped her keep up with everything her classmates were doing. This help, which both Sara and Gerard are very grateful for and which has worked very well for her.

Recovering from a year and a half of being bedridden

In addition to controlling the virus, the other major challenge Beth faces is "recovering from a year and a half of being bedridden," Sara points out. The stay in the ICU and the medications she had to take after the transplant have greatly weakened her muscles. That's why she regularly sees the physical therapist, where she does gross motor exercises—circuits, climbing stairs, and exercises to improve her balance—which she complements with fine motor exercises—twisting, modeling clay, gluing, and tracing—that Sara prepares for her at home. This summer, she also started going to the pool with the hope of improving her physical tone. "Now she can walk up and down stairs holding on, she's starting to jump with her feet together, and she has greater confidence, which allows her to start running," explains her mother.

Hard work and perseverance are fundamental character traits for Beth, a four-year-old girl who is "more mature for her age, and who unwittingly has yet to experience the world," says Gerard. "She questions many things that she sees as different from her life," adds Sara, a teacher by profession and the little girl's right-hand woman at all times. Sara tells her life story with passion, optimism, and serenity. She has been focusing her energies on Beth's care for four years and continues to recount with a smile the progress she's made despite the ups and downs. She has paid leave to care for her daughter and spends 24 hours a day by her side: "I'm a teacher and I pay more attention to her development. I try to do what I can and worry about seeing the small things that may happen in order to anticipate the day when it's time, that's why I'm at home," she says.

Thinking about the well-being of others

"Gerard and I promised ourselves that if everything went well, we would set something up," Sara explains. After spending almost a year and a half sleeping in the pediatric ICU at Vall d'Hebron and learning that not all rooms had a recliner for companions of admitted children, the couple decided that when they returned home with Beth, they would do everything possible to improve the quality of life for these families.

Thus was born the Fila Association, a non-profit organization founded in Vidreres (Selva). It has already secured the purchase of 29 reclining chairs for the Trueta and Vall d'Hebron hospitals, in addition to other items that both Sara and Gerard observed are necessary for order intake; three overbed tables for the hospital classroom service; 85 storage boxes for the personal belongings of children and their families; five small refrigerators for the Vall d'Hebron Transplant Unit; four music headphones and three isolation headphones for children with ASD; a vibrating pillow for pediatric physiotherapy; and three room dividers for the newborn area of Trueta Hospital. The Fila Association's goal is to organize three annual events: a public walk, a meeting of children with heart transplants, and a charity paddle tennis tournament, which will take place this September.

After all the progress, Gerard and Sara spend a summer enjoying Beth's progress and happy to share time together: "We have learned to do everything, to put aside what other people do and think about ourselves, and appreciate the small things we have achieved."