"A rare illness changed my life and tattoos gave it back to me"

PalmaMadita Wuiz has started over at 43 thanks to tattoos. She would never have imagined that her life would turn upside down due to an illness, nor that she would end up “finding beauty” in everything that has happened to her. Four years ago, her son Lleó was diagnosed with Duchenne muscular dystrophy. He was only ten months old and, since then, the family has been on a journey with one goal: for Lleó to be happy. Madita, her husband, Antonio, and their other two children, Álvaro, 21, and Nerea, 14, know that the best way to achieve this is for them to also be happy, despite the setbacks and painful moments.

Duchenne muscular dystrophy is a rare and serious genetic disorder that causes the body to stop producing dystrophin, a protein necessary for muscles to grow and stay healthy. Children with this disease stop walking between the ages of 7 and 12, and life expectancy is between 25 and 30. There is no cure. As the disease progresses, muscles weaken. Madita is a carrier, and in her case, the probability of the gene affecting a male child was 50%.

“When they tell you the diagnosis, it's like a slap in the face,” says Madita, who decided to give up her job as a beautician and stay home to care for her son. “Lleó needs regular medical visits and follow-up: neurologist, geneticist, cardiologist, respiratory specialists, and physiotherapy, among others,” explains Antonio. In addition, once a year they travel to Sant Joan de Déu Hospital in Barcelona, where specialists in the disease examine him. Currently, Lleó walks, but he has mobility problems, needs help to get up from the floor, and cannot go up or down stairs by himself. “He doesn't have the agility of his four-year-old peers, nor can he play in the park with the same freedom,” says Madita, who is already beginning to notice that other children do not treat her son the same way. “We know this will happen more and more,” points out Antonio.

Another world

Stopping work meant Madita lost a large part of the life she had had until then. “I am a person used to being with people and I suddenly found myself at home with the child, within four walls,” she comments. Lleó needs constant attention and any unforeseen event fully affects the family routine: a fall or a minor injury can mean he cannot go to school.

In this situation, tattoos appeared as an unexpected possibility. Antonio had had some done and suggested Madita take a course. “I have always been good at drawing. I am creative. But with my children, I had put that facet aside for years,” she explains.

At first, she thought that going back to studying and having to do practical work might be a bit too much in her situation. In addition to the artistic part, to do tattoos, one must know the hygiene and safety regulations and undergo specific health training. But she decided to give it a try and started the course at the beginning of the year, training that introduced her to a different world and allowed her, without leaving home, to distance herself from anxiety. With the basic training completed, a new professional horizon also opens up.

Tattooing has been an escape route. "Suddenly there is nothing else. I sit down and I feel good. It's me," she says, recalling how important it is to have one's own space, both physical and psychological. Antonio assures that for him it has also been a very important change as a couple. "I see her excited, happy, fulfilled," he points out. Madita wants to do things and doesn't spend the day thinking about what will happen with her life. Now there are designs to prepare, people who write to her because they want a tattoo, and work that forces her to concentrate. Madita has set up a corner of the house to work, with a table and all the necessary material.

A family grief

The family has experienced Leo's situation differently. The older brother experienced it "more intensely," while the middle one "took it more naturally," explains Antonio. At home they know that Duchenne muscular dystrophy is there every day, but they have decided not to make it the permanent center of family life. "We can't be destroying ourselves every day," assures Antonio, who, due to his son's illness, had drug use problems and has now taken refuge in religion.

As a carrier of the altered copy of the gene that causes the disease, Madita has endured a particularly hard psychological burden. "They can explain a thousand things to you rationally, but your mind goes elsewhere," she says, becoming emotional when she talks about her tattoos. "I didn't know this could exist: that something so bad could come out of something so good," she adds. After four years focused only on her son's illness, Madita says she feels like a person again.

Their biggest concern is the future, because Leo's illness will worsen. "Our job is to prepare him and prepare ourselves for when the worst moments arrive, which will be very hard. Curves are coming and we will have to be ready," comments Antonio.

Meanwhile, Madita also wants to keep moving forward. Now she wants to specialize in realistic tattooing and dreams of one day having a space with her name. "Advice for other women in a similar situation? That if they have a dream, don't let it pass them by. Having a sick or disabled child doesn't mean giving up on your dreams," she states.