Even a few switchbacks can be dangerous. It’s called stone man disease. Dario and his family prefer to think more of an astronaut. But the reality is that the stone man is what best defines Darío’s reality. “With this disease, we make statues”explains Beatriz de Haro, Darío’s mother. “This generates a second skeleton and they are encased in their own body.”
Darío is 4 years old and a month before his 2nd birthday, he received the diagnosis: Fibrodysplasia ossificans progressive (FOP). It is a rare and degenerative disease that reaches 40 cases in Spain and 2,500 worldwide.
FOP causes muscles, ligaments, tendons, and soft tissues to turn into bone. It is a genetic disease that gradually causes those affected to lose mobility. By age 20, they are usually in a wheelchair, they were told on the day of diagnosis. FOP manifests itself as inflammation in the body. These inflammations cause the transformation of soft tissues into bone. Inflammations can be caused by strokes, viruses or spontaneous outbreaks of the disease itself. This is why it is important that Darío is not affected, that he does not catch a virus, that we do not even talk about surgical operations – “Appendicitis for him can be catastrophic,” says Beatriz – in fact, he cannot even receive an intramuscular vaccine. Despite this, they warned the parents: even if you put Dario in a bubble, his condition will worsen because it is a degenerative disease.
With the diagnosis also came all the no’s: no balls for Darío, no bikes, no running, nothing that could hit him. Of course no judo, his father is a teacher. Currently, Darío practices swimming (the only sport he can do) and halotherapy because his lung capacity is reduced by 50%. “Almost all of them die from respiratory infections,” says Beatriz.
Nothing has ever been hidden from Darío because he must be very aware of his limits. “He needs continuous and permanent monitoring,” adds his mother. “We don’t want him to stop being a child, butIf he was not aware of his illness, it would get worse. The greatest cruelty is that the situation will never be as good as it is today. Now he has all the mobility.
Beatriz remembers that the first year of diagnosis was horrible, she had never been so afraid in her life. Remember his anger at the world, asking again and again why me, why us. It made her angry how everyone around her continued with their lives and she felt like hers was over. It was a grief that we had to go through and a learning experience. Learning to live with FOP is what she tries to pass on to her children: Darío and Andrea, 14 years old. The mother and daughter continue to receive psychological therapy privately because public treatment has taken too long. It suits them both very well. Beatriz thinks that When you have FOP, mental health is very important. “And we families don’t have support,” he says, “we have to get it through associations or individuals.”
His greatest concern has always been his daughter Andrea. He cries as he talks about how difficult it is trying to let his brother’s illness affect him as little as possible. The first year after diagnosis was also very difficult for her. “And as a mother, you always wonder: Am I doing it right? The guilt you feel for not being able to give him the attention he needed. For a sister, a situation like this is very difficult. Now things are going very well,” he said, alternating between tears and smiles.
“Now you see me very whole,” she says, “I am already very aware and I am also grateful for the health aspect that I know other families do not have. The doctor in Darío de León is fabulous, as is the specialist in Madrid, who is the only doctor specialized in this disease in Spain. But grateful also because There are other countries where there is not even a doctor specializing in FOP.“.
For two inches of nothing
Darío and his family are from a small town in León, La Pola de Gordón. “Here I also feel lucky because there are more advantages than disadvantages in rural areas. It is also true that Darío does not need to do a lot of therapy, only swimming and halotherapy, and we do not need to travel a lot. In the city there is a school and an institute and everyone knows Darío. They have dedicated a lot to him, I think that when you give him a face and a name, everything is more easy. In cities, everything is more impersonal. we feel very protected», says Béatriz.
“The worst part of this disease is when you are told that there is no cure or treatment,” says Beatriz. He could not sit idly by, he felt helpless and in this context he decided to concentrate his efforts on at least getting treatment. This is how they created the Por Dos Pulgares association in Nada.
This name comes from the fact that the vast majority of babies born with FOP have the big toe tucked inward, under the rest of the toes. The association’s sole purpose is to raise funds for research. Beatriz is very grateful to her city and her environment because within the association they have done (and are doing) countless activities to raise funds and many people still participate in them. “Football exhibitions, judo, papanoelada de León, firefighter calendar and much more,” he says. “The best thing we do is a cabbage race. Many schools participate and in the first year we raised 82,000 euros which went directly to research. In general, there is a lack of research for many diseases: cancer, it doesn’t matter. And research that helps one disease can help another.” Thanks to the association, Beatriz met a researcher in Oviedo who receives the funds collected.
This summer they did a great job adapting the house even more to Darío. The bedrooms are upstairs, so they converted a garage into Dario’s bedroom with its own wheelchair accessible bathroom for when he needs to use it. In this room, everything is planned so that it is not touched. “That he can have his autonomy without harming himself,” assures his mother. There are times when Darío has to wear a helmet, knee pads and elbow pads to avoid hits. When he wears all the protective gear, he looks like an astronaut. This is why his family prefers to talk about the boy astronaut.
Part of the work they have just done will be paid for the prize she has just received: They Tell from the Bad Mothers club. “Half will go to pay for part of the work and the other half will go to the association, for research,” he explains. “The best thing about They Count is connecting with other moms who are in your situation. Because they understand you, no one else understands you. That’s the greatest reward.”
The association focuses on research, but Beatriz now also wants to give a boost to visibility. “That’s why I ask you to follow us on social networks. Through our profiles, parents from other countries with children with FOP have contacted me. We need a lot of visibility», he concludes.
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