The daily battle of Daro, the youngest patient in Spain with fibrodysplasia ossificans, an ultra-rare disease

2023-09-15 12:50:39

Updated Friday, September 15, 2023 – 12:50

Their muscles, tendons and ligaments ossify “and cause a second skeleton to be generated in the body with all the complications that entails”

The foundation that Daro’s parents have created. For two thumbs of nothing

Daro Rodriguez has from to and suffers from a disease called ultra rarethe fibrodysplasia ossificans progressiva, an ailment that causes his soft tissues to transform into bone, which makes him the youngest patient in Spain to suffer from it and makes his day-to-day life a continuous battle to ensure a minimum quality of life.

Their muscles, tendons and ligaments ossify “and cause a second skeleton to be generated in the body with all the complications that entails,” explains his mother, Beatriz de Haro, in an interview with EFE, in which she warns that any type of inflammation can turn into bone, so Daro, at two years old, is learning to play without hitting himself or falling.

“We must protect him from all kinds of blows, something very complicated, because even a few shoelaces can cause inflammation,” says his mother, while regretting that even if they put Daro “in a bubble” it would not matter, “because outbreaks can arise.” spontaneously.”

His mother confesses that all the plans they had for the little one, after the diagnosis, changed radically. “Daro can’t ride a bike, he can’t do many things. The neighbor takes the opportunity to play soccer when he takes a nap,” she details.

The little one was born with four turns of the umbilical cord, which caused him to not fully develop his hearing and “he couldn’t hold his head either, he had a fairly long neck… And he had one thing that no one noticed, only his dad saw, which was that his big toes of the feet were tucked inward,” he recalls. Beatriz de Haro confesses that she always knew that something was wrong with Daro even though “the doctors, at first, insisted that his feet could be operated on.” “And thank goodness we didn’t operate on him because precisely in his feet was the answer to Daro’s problem,” adds her father, Scar Rodríguez.

After numerous tests it was a specialist from the Salamanca Hospital who gave them the definitive diagnosis. “On June 1 they told us that the problem with the toes combined with the lumps on the head” that the little boy had “was fibrodysplasia ossificans progressiva,” continues the father, who trusts that his son’s case will come to an end. every corner “so that, the moment a doctor sees a baby’s feet, he identifies the disease and no time is wasted in reaching the correct diagnosis. Daro’s parents They have created a foundation called ‘For two thumbs of nothing’, in reference to the first sign of the child’s illness, from the small town where they reside, La Pola de Gordon, in León.

With it they want to give visibility to this ailment that only between 40 and 50 people in Spain suffer from and there are barely twenty specialists in the world to treat it, explains Beatriz.

Today there is no cure

“Today there is no cure, and for Daro there is no type of treatment “that can help except corticosteroids to reduce inflammation,” says his mother, but that doesn’t make them feel unfortunate because they know that “there are other rare diseases with less progress.”

Daro’s is a mutation in the ACVR1 gene “And knowing the gene is already an advance because they know what causes the disease and where they have to attack it,” he says. His hope lies in the fact that there are several clinical trials to develop medications, although at the moment they are intended for patients over 14 years of age.

Beatriz does not hide the pain it causes her when someone refers to her baby as ‘the stone child’, and emphasizes: “If they have to call him something, we prefer it to be ‘little astronaut‘”. He explains that this is how, with a diving suit, his father imagined him in a mural that he painted before Daro was born and that is how they want him to be known, for the profession that, they hope, he can perform in the future. Traveling to space would be a way to fulfill a dream in a place where Daro would not be weighed down by the second skeleton that hides his body.