Caio’s story and his fight against leukodystrophy metachromatic is a powerful testament to love, loss and resilience. Clésia da Silva Mendes Zapelini and Clávison faced the unimaginable when they discovered the condition of their two-year-old son, expected to live just another 18 months. Against all odds, Caio celebrated his tenth birthday, a mark of his incredible struggle and his parents’ dedication. “Little Big Gaius,” written by Clésia , is not only a tribute to her beloved son, but also a guide for those navigating the unfathomable pain of losing a child. With honesty and courage, this book not only shares Caio and his family’s journey, but also how they found new meaning and joy in life, transforming a devastating experience into a message of hope and love.
How would you describe the emotional and physical journey you faced in dealing with your son Caio’s illness and subsequent loss?
The journey with Caio was a very learning experience. We can use the metaphor of a roller coaster in the face of the challenges we faced with each achievement: a smile; feeding orally when the strength to swallow was being lost; breathe calmly, without the need for suction; everything was a victory. However, as the disease progressed, our feelings fluctuated between hope and despair . When he had difficulty performing any action, which is common in children in his age group, the pain gnawed at us. The pain passed between body and soul. Given the attention we had to pay throughout the day and night, our bodies got tired and showed signs of exhaustion, but we couldn’t let ourselves get discouraged because it really needed our strength and courage. Therefore, until your departure, we were part of your body so that the journey would be as light as possible. With his departure, it was difficult to return to the routine, as our bodies had already become accustomed to Caio’s needs. The heart was sad with longing, the pain of letting a child go early, but with the certainty of duty fulfilled. We did everything possible for our angel of light.
What was your motivation for sharing your personal story and journey of grief in the book “O Pequeno Grande Caio”?
On the second day after Caio’s departure, I went to a university library to research children who had died. I had done this research on the internet, but the results indicated children and young people with other diseases. I found scientific articles, but what I wanted was to know how a mother went through grief after losing a child who had a previous diagnosis and who, over the years, lost its vitality. Because I couldn’t find it, I decided to share this challenging but beautiful story because of the way we lived the ten years with Caio. By recording our experiences, we can help other families who are also going through something similar or even inspire people to fight for their life goals.
How did you find the strength to turn the pain of loss into a celebration of life and a way to help others going through similar experiences?
The strength to transform the pain of loss into a celebration of life comes from God, from the love shown by family and friends. From the moment a child is born, our lives are no longer the same, there is a great emotional transformation. However, when experiencing grief, even in the face of immense pain, we find the strength to honor Caio’s memory. He was so courageous throughout the development of the disease, he taught us so much about the meaning of life, that ten years is not enough to talk about this boy. He was and is a child who left and his experience left a great light to illuminate the lives of so many other people. The tears of longing, feelings and memories bring back the importance of experiencing true love and celebrating life every moment .
In addition to the book, you are producing a documentary about Caio’s life. How did this project unfold and what is the main message you want to convey through it?
The documentary about the experiences we had with Caio is one of the ways we can honor the memory of an angel of light. The documentary will allow the visual and auditory dimension to go beyond the words printed in a book. Through real images and moving testimonies, the documentary will capture nuances and emotions that are difficult to convey through writing alone. Its importance lies in its ability to reach a wider audience. The main message we want to convey will be to show our journey and inspire other people who are going through something similar . And, in this way, they enable the child to live their childhood intensely, even with a short time to live.
How do you approach the topic of maternal grief related to the loss of a child to serious illness and how do you hope your book will help others facing similar situations?
The theme of mourning is approached from the perspective of maternal love. With each page and chapter, the words echo in the reader’s mind in an attempt to share an experience that is more than being a mother, it is giving the opportunity for a being to keep the flame of life burning. In this context, in the narrated scenes, mothers who go through similar situations feel echoes in their own experiences, sharing tears and smiles. It’s a warm hug, a soft voice that whispers, “You’re not alone.” The lovingly written words offer comfort to souls pained by the loss of their children. Each line is a reminder that love transcends death, and memories live forever in the hearts that love. Thus, the book becomes a beacon of hope, guiding mothers through the darkness of grief, illuminating the path towards resignification and inner peace. It is a shared journey, where empathy turns into healing and pain turns into unconditional love.
What were the most significant challenges you faced in dealing with Caio’s illness and death, both emotional and practical?
Dealing with Caio’s illness was initially desperate. The wait for the diagnosis, the search for a cure, the news that there would be no treatment, each piece of news was a moment of pain. However, we learned to live with challenges daily, seeking to maintain hope in the face of uncertainty. Knowing he stopped breathing was also overwhelming. Even if you imagine it could happen, the moment the devices stop working and you see the little body without energy, you say “it’s the end”. Ironing the last piece of clothing to be put on is also challenging. You feel like there is a knife, even a symbolic one, cutting through your being. There are no words to explain. It is by living that we can experience this pain that has no name, so strong is it. However, the experiences were so significant that it was impossible to say “Goodbye”. Caio remains alive in us, even without his physical presence.
Throughout the process of writing the book, what were the most challenging and rewarding moments for you?
The most challenging moments were reliving the news of the diagnosis, knowing that his son would soon die, the respiratory arrest at home, before leaving and the moment of death announcement. Finding the balance to relive these moments, even if in the form of memories, was very sad. Sometimes I stopped, there were no words to say, the emptiness filled my being again. I would go out, have a coffee, turn off the computer and let my feelings calm down and, at another time, return. Thus, the narrative was created letter by letter, word by word, chapter by chapter, in the same way we did with life. Live every second, every minute, in the best way possible. I can’t help but note that, despite being challenging, the book’s narrative enchanted my soul as I realized that we experienced so many things in such a short time.
In addition to your career in Education and as an author, you are also a speaker. How do you share your story to inspire and offer hope to others?
Sharing our story means leaving the memories of little GREAT Caio alive wherever we share. With each lecture and interview, I observe that, when telling the story, many people encourage each other to fight and overcome their problems. Reflection allows people to understand that life is to be lived intensely, regardless of the adversities that come our way. In each place, someone always comes with some story of struggle and overcoming, and the person identifies, feels welcomed with the difficulties. I feel that little Caio’s mission is BIG, so it cannot be restricted to a few people. Caio deserves to win the world with his beautiful life experience.
What are the main values and lessons you want to convey through your story and your talks?
Through our history, we want to provide opportunities for reflection on values such as: resilience, compassion and perseverance. In this way, we can inspire other people to find the strength within themselves in the most difficult times and to face life’s challenges with courage and determination. Furthermore, I seek to share the importance of empathy and mutual support, showing how small gestures of kindness can make a big difference in someone’s life. I also want to highlight the importance of finding meaning in adversity and learning from experiences, transforming them into opportunities for personal growth. Finally, I want to convey the message that, even in the face of the greatest trials, there is always hope and the possibility of a better future .
How do you see the potential impact of your book and documentary on raising awareness about rare diseases and supporting families facing these challenges?
I see the potential of the book “O Pequeno GRANDE Caio” and the documentary “Caio: uma vida, mil Graças” as a powerful tool to raise awareness about rare diseases, capable of helping with the challenges faced by these families and amplifying their voices. By sharing my own journey and the experiences of other families, I hope to open the world’s eyes to the reality of these often overlooked conditions. Furthermore, by highlighting the unique obstacles faced by these families, I aim to encourage greater understanding and empathy from society. I hope my work will also help mobilize resources and support for rare disease research and treatment, offering hope and guidance to families facing these challenges. Ultimately, I aim for my book and documentary to serve as a source of inspiration and strength for all those battling rare diseases, reminding them that they are not alone in their journey.
Follow Clésia da Silva Mendes Zapelini on Instagram