BBC | Brazil Features Red Fred Project

(Translated from Portugese; view the original article here.)

1 October 2020

Books gather stories that children with serious illnesses want to tell the world

A bird that became friends with fishes and, therefore, could swim, as well as fly.

A dragon whose fire carries kindness.

A date that disappears from the calendar and motivates an adventure in its search.

Behind these children's stories are authors with their own "exceptional" life stories - whose books have hit the shelves of one of the most important libraries in the world, that of the American Congress. They are part of the Red Fred project, in which the American designer Dallas Graham, 45, joins children with rare or serious illnesses to create and publish books with unique stories. It all starts with a question asked to them: if you could write a book for the world to read, what would it be about? So far, 18 children have participated in the project in the United States, and have chosen to tell the world stories about friendship, family, bullying and overcoming. The amounts generated by the sale of books, many of which have already been sold out, go to the children's family, or to initiatives they support, such as assistance to other people with similar health conditions. Graham says he wants to learn about the history and imagination of other girls and boys around the world, expanding the project to other countries, including Brazil. The designer is already one step closer to the country - on October 3, he participates in the third edition of the inFINITO festival, which deals with themes about life and death and, this year, will be held online. Ticket information is on the event website. "Of course we, as adults, have a tendency to want to go back to the ways that children see the world - in a magical, vivid way, with a child's bright eyes. But these are children who are getting mature very fast – living things that many of us adults never go through regarding our health ", said the designer to BBC News Brasil by video call. "They know realities that we don't. These are children living in extraordinary circumstances and creating incredible stories. They have a beautiful perspective on the world, but that doesn't mean they don't suffer, they don't feel pain."

*The story that inspired the project*

After a pause in which his eyes were filled with tears, Graham recognizes that grief and pain are part of the project – going from the routine, in which meetings to create the books need to fit in an intense schedule of treatments and exams; to its very beginning, seven years ago, after the death of the son of friends. He suffered from Duchenne muscular dystrophy and, learning about the situation in 2012, the designer wondered what he could do to help. Suddenly, an idea came: "I want to make a book with him". The family came to agree with the proposal, but the boy died and the stories - his and the one he would write - were interrupted. "I remain in contact with his family - they are very kind and understanding. After all, he was not my nephew or son. But they are very supportive of the project, which changed my life. For me, it brought a real change of perspective", says the designer, who now lives entirely on the project, financed by donations and the sale of books - which, according to him, already have a loyal fan base. "His story was an inspiration for so many others. I realized: we need to exchange with these children, you know? We are adults, it is not difficult for us." Many children have conditions with which they will live, making adaptations. However, some have already died in this trajectory. "The project has a lot of mourning, and a lot of care too. For my part, I try to make this process beautiful. Because life is beautiful, and it is also fragile," says Graham, emotionally. "I feel it very deeply. I see the most beautiful side of humanity, but also very hard. It sometimes makes me weak. I'm still learning to deal with these things - I try to eat well, have professional (psychological) help, practice yoga lessons. In the end, the project helped me to be more open to the world and to be a better friend for everyone.”

*Building memories*

Graham and the child authors usually spend about five days creating together - and that goes from choosing characters, usually a troupe of birds that is repeated in several books; the plot and aesthetic presentation of the book. Often, illustrations are added to photographs taken in places chosen by children, in the region where they live. "This is a way of solidifying memories. One of the children, D *. (who is undergoing treatment for a neuroblastoma), chose to include photos of a lake to which she was going after her cancer therapies. She said: I want everyone to know the lake. The truth is that many children know that they have a disease that threatens their lives, and are willing to live life that way ", says the designer. Family participation is essential in the process, and books become, regardless of the future chapters of these children's real life, memory. And for Graham, living with these people is also something that personally moves him. "It is difficult to see children suffering, it is difficult to see families suffering. These people have their lives turned upside down, and they have to deal with the costs of operations, of health, on top of everything else. They are brilliant examples of how to persevere, how to solve problems, how to get involved with their communities. " One of the "incredible" examples of this, cited by the American, is that of the family of Alejandro Ako, who has generalized paralysis caused by severe spinal muscular atrophy - it affects the functioning of the muscles, requiring the use of a device to help him breathing. But Alejandro manages to move his eyes – and he communicates through them, using a software created by his father, who works with programming. With this device, Alejandro created his story with "his eyes", says Graham, amused. "The most incredible point of the project, for me, is to meet these families. They are the most incredible people in the world", exalts the designer. One of these people, Guiller Bosqued, Alejandro's mother, spoke with BBC News Brasil via e-mail about transforming his son into an author. In March, face-to-face meetings were held, but then the process had to be completed virtually due to the coronavirus pandemic. Alejandro's book is receiving donations to be published. "Initially, we hesitated to commit to the project because our time is very limited, but Dallas was able to accommodate this very well and we never need to disorganize our routine," recalls Guiller, who lives in the city of Chicago. "Alejandro was always very excited for the meetings, and they were a lot of fun." The boy created the story of Peco, a bird that lives in a hospital - "which is one of Alejandro's favorite places, which he visits often", explains the mother. One day, Peco realizes that a friend's birthday has disappeared from the calendar, and a troupe embarks on the search for that "lost day". "Dates are a subject that Alejandro has always loved - he loves talking about them and has an extraordinary ability to remember them," says Guiller. "Dallas did an incredible job guiding Alejandro through the writing process, but ultimately it was Alejandro who made all the decisions, choosing the bird's design, his name, the characters, the setting and the script." Dallas Graham explains that he seeks to give children a lot of freedom to make up their stories - even if it means abruptly changing the script along the way. Some, but not all, match the children's own biographies, Graham says - like that of a bird that had difficulty flying, staying always in its tree because of that. In the end, the character, different from the author due to his health condition, manages to move.

*'Defend what you love'*

In each book, children are also invited to suggest two lessons for the world. N. *, for example, wrote: "Sometimes our dragons help us." G. *: "Defend what you love most." M. *: "Stay true to yourself." But while we adults seek deep meanings in the eyes of the children, the designer says that, for these young writers, the motivation to participate in the project can be much more... pragmatic. "They become authors of a children's book. It's a big deal. There will be a publication, a book signing session, with the whole family, friends and community. Your book will be in the Library of Congress, one of the most important in the world, forever "he says. "But it is also a form of personal expression. Of being identified beyond your health condition." Alejandro Ako's mother says that, in the case of her son, all these motivations were realized. "It was an opportunity to create something that came within him and was truly his. It was something that gave my son a sense of accomplishment and even the realization that he did something that not many people will be able to do - write a book", reports Guiller Bosqued. "All of our friends, his teachers and colleagues know about the book and congratulated him. It was very rewarding and cool to have him in the spotlight." However, the coronavirus pandemic is already affecting essential stages of the project - especially those that promote interactions between people, such as the meetings with Graham and the book signing session. After all, the immunity of many of these children is fragile, which requires extra attention when facing COVID-19. Graham's next meeting with a child is scheduled for October, possibly virtual. Anyway, regardless of the means, we can expect the birth of another author of children's books and the revelation of his exceptional stories.

*Some names have been omitted as, according to BBC standards for the protection of children, names and images of minors can only be published with the authorization of guardians, which was not attained.