How It All Began ?

Support us with a PIX or PayPal:
Make a PIX to ancerg@ancerg.com, which is also our PayPal key. Your support helps us continue our work!
Support us by making a PIX with your heart: ancerg@ancerg.com ❤️

In 2016, Arthur was supposed to undergo cataract surgery on his left eye, but we discovered he had a retinal detachment, which complicated everything. Since Arthur is deaf and retinal detachment needs to be treated within 72 hours to avoid permanent damage, the situation became a medical emergency. However, we didn’t know what was happening because our son does not speak, and appointments with doctors, especially ophthalmologists, depend on the long waiting lists of the SUS.

The free healthcare system, though essential, often doesn't consider certain situations as emergencies, which makes accessing specialized care a significant challenge. The cataract surgery was eventually ruled out because the doctors said that, in this case, it would be purely cosmetic, just to prevent the cataract from making the eye appear bluish. They would not perform the procedure, and Arthur lost sight in his left eye.

Still, in 2016, we noticed Arthur was taking longer to urinate. We realized that the urine passage in his penis was closing, and this got worse until it became as thin as a hair. For eight years, we waited on the SUS waiting list, enduring the bureaucracy of a system that often doesn't treat severe cases as emergencies. We discovered that by giving him water every 15 minutes, we could prevent urinary infections and stop the urinary canal from closing completely, but it was exhausting.

Many times, the canal would close, and we had to take him to the emergency room, where, with great difficulty, they would insert a catheter. On those occasions, it would take 8 to 10 people to hold him down, in addition to me and Jane, to manage our son's suffering. For years, we faced this routine: constant water, hot baths to relieve the pain, and an uninterrupted vigil to care for Arthur. Despite everything, emergency care rarely made exceptions to the CROSS queue, the system that regulates specialized care in SUS.

Only in 2024, at the Mandaqui Hospital Complex, were we able to get Arthur properly examined. The doctors, upon seeing his condition, were shocked and almost in unison repeated: "My God, your son's situation has been an emergency since 2016." Thanks to the intercession of my godfather, Garcia Ricarte Evangelista, and the indignation of the healthcare professionals who performed the surgery, the doors finally opened. Arthur was treated with the care and respect he deserved.

One week after the surgery, Arthur was able to urinate without pain and without a catheter. He seemed confused, as if he didn't understand where the pain that had followed him for so many years had gone. The doctor who performed the surgery, visibly moved, went to Jane while she was waiting in the emergency room. He showed her a picture of the procedure and said: "We were sure it would be necessary to open everything, given the eight years of this situation. But that wasn't necessary. It's a miracle."

I shared this story with a nurse I met in a culinary course that Jane was taking. After hearing everything, she told us something that stayed with me: "You think you didn't do anything? You both stopped your careers, created an almost impossible discipline to give your son water, made sure to have him in a hot shower every 15 minutes, prevented serious urinary infections, and in doing so, avoided more severe complications, like a ruptured urethra. It was God who acted, but He also acted through you. I'm sure He will restore all prosperity to your talents."

During the six months leading up to the surgery, while maintaining this routine, I wrote Orssana Stevenson and the Universe Between Worlds. I wrote at night because it was the only time I could dedicate myself to it, and Arthur might need me during the night. Today, I pray to God to open our paths: for me as an artist, and for Jane, who wants to resume her career as a chef. She used to work as a chef at home, cooking for families, but stopped during those difficult years. Now, we're focused on paying our electricity bills (which are our priority at the moment) and saving money to rent a larger house in São Paulo.

Our son, Arthur, the King, has Down Syndrome, is deaf, and blind in his left eye. In the universe of Orssana Stevenson, he is Master Thäérin Lýthäen, a being with an unshakable tranquility. Since his birth, I have been dedicated to the fight for the inclusion of people with special needs, which has made me see life in a broader way. Everyone should be seen, respected, and acknowledged.

Orssana Stevenson is about the true meaning of inclusion, which applies to any need it may involve. To me, all people who are different have a special value and are essential for the harmony of the world. We are all different, and unfortunate are those who cannot see the beauty in others' differences.

In light of this, I began to wonder: throughout history, have there been births of people with Down Syndrome? I discovered that, in ancient Egypt, scientists found traces of a person with characteristics of Down Syndrome, and these children were recognized and treated with kindness and reverence by the community. This suggests that, rather than being seen as excluded, these children were treated with respect and care, reflecting a social understanding and acceptance in ancient Egyptian society.

I also studied research conducted at archaeological sites in Ireland and other regions. The findings indicate the presence of people with characteristics of Down Syndrome dating back to 3,000 to 4,000 years BC. Some of these individuals were found with ceremonial objects and in prominent locations, suggesting the respect and consideration they received in their communities.

Although the concept of autism was not defined at the time, I included it in the narrative because I have always seen these conditions as something much larger, magical at many moments. Autism, unlike Down Syndrome, does not have visible physical characteristics nor is it identifiable in DNA, making it difficult to assert its presence in the past. However, I sense that autism, like Down Syndrome, has always been part of human history, existing since ancient times, though without the terminology we use today. These conditions have always been here, with their nuances and charms, perhaps even more understood in some ancient societies.

This research and these discoveries inspired me to create Orssana Stevenson and the Universe Between Worlds, because to me, both Down Syndrome and autism are not limitations. I don't see them that way. I speak about what, for many parents, is a profound enchantment. There is something special that compels us to feel, in the depths of everything, immense gratitude for these lives, which are a gift to the world.