Hip-hop, ballads, pop, rap, Raphaël is able to move to any kind of music, and he certainly seems to have the tempo ! In rhythm with the music, with a smile on his face, his head and chest sway to the beat, so much so that you almost forget he’s in a wheelchair. Raphaël suffers from a rare disease that has a major impact on his daily life, but that doesn’t stop him from shining with a zest for life. The love of his mother and those close to him gives him the strength to fight. Today, Toombow Kids tells you the story of this remarkable teenager.
French-Portuguese Raphaël will blow out the candles on his sixteenth birthday cake on August 8, 2023. The young man has come a long way since then, between constant trips to the hospital, operations and medication. When he was born, however, there was no sign that Raphaël had a disability. His mother, Maria Rosillette, was already the proud mother of two children, Marcus and Maitëna, now 22 and 20 years old respectively. It was only after a few months that she noticed her youngest child’s difficulties, such as not being able to fetch his toys or sit up on his own. These difficulties became more severe when, at just over 1 year of age, the infant was unable to walk or talk, had great difficulty chewing, and was drooling a lot… These signs naturally alarmed the mother, but unfortunately no accurate diagnosis was made at that time. She fought on, knocking on one doctor’s door after another, until Raphaël was 3 years old and she learned that her son had a rare disease with no known cure. He had congenital muscular dystrophy, which over time affected all of his muscles, including his heart. Today, as a result of his general illness, he also suffers from cardiomyopathy. At the time, Maria was shocked by the diagnosis.
She fought on, knocking on one doctor’s door after another, until Raphaël was 3 years old and she learned that her son had a rare disease with no known cure. He had congenital muscular dystrophy, which over time affected all of his muscles, including his heart. Today, as a result of his general illness, he also suffers from cardiomyopathy. At the time, Maria was shocked by the diagnosis.
“When the neurologist told me, I collapsed. As researchers had very little information about his illness, we had to live with a lot of uncertainty about his development. We didn’t know how to manage and educate my child, whether he would talk or walk. The support was basic and the care workers didn’t know much. I needed psychological help, but what helped me the most to take good care of Raphaël was my love as a mother. I also had a breakthrough when the neurologist asked me a question. “With all the good things Raphaël can do, why do you fixate on the things he can’t do? Raphael is the way he is, and even taking into account his limitations, he’s a wonderful and very lovable boy.”
Raphaël’s disability means that he is not independent and needs constant care. For this reason, he spends several days a week in a specialized center and another part of the week at home with his mother, who works from home. Two activities that can be complicated to manage, especially if you’re like Maria, a busy mother who also works in a high-level position at a famous amusement park in Paris, which takes a lot of energy, but manages to handle both,
According to her, it’s the support of her family, her background as a former athlete and her personality that make her strong. Resilient by nature, she really enjoys working, because it gives her a break from the daily grind of dealing with an illness. As she reveals, when you have a child with a serious diagnosis, you don’t know how long he or she has to live. For a long time, this fact prevented Maria from doing anything that didn’t involve Raphaël, because she felt guilty. Today, with the benefit of hindsight, she realizes how important it is to take time for oneself.
“I used to feel guilty when I laughed. You have to take care of your body and especially your mental health. Sometimes I need to go away for 2 or 3 days on my own. You can’t stop living, and I encourage people like me to take the time to have dinner with their friends once in a while. When you take care of yourself, you’re more available to take care of others. That’s the key for me! It’s not selfish, because doing well allows the children to do well.”
Raphaël is a loved child, and he knows it. As his mother says, he’s not a sad person, he’s happy! Around him, his brother and sister are very protective and attentive. The teenager loves to eat good food, spending time with his family and watching movies, especially the older ones!
In September, Raphaël will undergo a major operation to remove his gastro-nasal tube, since he has been able to eat more independently for over two months now. In the meantime, Raphaël will continue to look at the world around him with his pure gaze. Toombow Kids wishes this young and courageours hero the best of luck as he continues to fight as he has always has. Maestro Raph, let the music of joy begin !