At the beginning of 2003, little Judith was admitted to the emergency room of a hospital in Valencia and her parents were told that she was very bad and that she was going to remain “vegetable” forever. The girl was 15 months old at the time and, after many tests, she was diagnosed with the rare disease she was born with, a glutaric aciduria type Ia genetic problem that causes glutaric acid to accumulate in the blood like a poison and caused serious and irreversible brain damage.
Some time later, the parents learned that if Judith had been born in Galicia, where the detection of this disease was already included in the heel test, she would have been treated in time and would not have the cognitive and motor difficulties that she is now trying to overcome after years of rehabilitation. “At 15 months I was like a doll and my parents didn’t know what I had,” says Judith, who still finds it difficult to express herself. “[Siento] anger and a lot of helplessness; When I was born there was already the heel test, but in Valencia my illness was not in the national plan.”
Judith Ruiz is the protagonist and host of the documentary Life in a dropwhich aims to reflect this situation of injustice that produces the difference in the number of diseases that are detected in neonatal screening in each autonomous community. Since 2014, the Common Services Portfolio established the obligation to screen for a minimum of 7 diseases, but in some regions this number rose to more than 30, generating situations of great injustice. “Why do you get X diseases in some places and not in others?” Judith’s father asks in the documentary. “Is it because of money? I think it’s not for money, why is it then?”
An overwhelming game of mirrors
Throughout the 105 minutes of the feature film, directed by Pedro Lendínez and with the collaboration of the MasVisibles associationthe viewer accompanies Judith on a journey that begins in the kitchen of her house, preparing the cocktail of medications and nutrients that she has to take every day to compensate for her restricted diet.
Next we enter a game of mirrors in which Judith learns about the case of Izara, a girl from Santander who is now 11 years old and ended up much worse than her due to the same lack of diagnosis, and that of Alejandra, an eight-year-old girl. years of Jaén that did benefit from the early detection of the disease in the health system in 2016.
I can’t handle that injustice. May Izara be like this and may I be as I am. It’s very hard
Judith Ruiz
— Affected by glutaric aciduria type I and protagonist of the documentary
“Izara’s case touched me a lot,” Judith confesses during the recording. “Why do people like her have to be like this? I don’t understand. I can’t handle that injustice. May Izara be like this and may I be as I am. That this continues to happen seems fatal to me, because she shouldn’t be like this, she should be normal. “It’s very hard.”
Conversation with your healthy self
Although the most serious case is that of Izara, possibly the most striking sequence of the documentary is the brief conversation that Judith has with Alejandra, the girl who is perfectly healthy thanks to early detection and treatment. Because, in some way, she is talking to the “healthy” girl that she could have been if things had been done right.
“You were diagnosed in the heel test, right? “How wonderful!” Judith is amazed during the dialogue, and then explains what happened to her neurons due to the late diagnosis, which “spin more than a normal brain” and which had to be “re-educated.” so he could walk and talk.
This difference in outcome depending on early diagnosis was one of the most striking effects observed after the discovery of the first metabolic diseases in 1934, by the Norwegian doctor Ivar Asbjørn Følling. After detecting the first cases of phenylketonuriathe specialist launched a system to detect it in babies and there is a famous image that summarizes this contrast: in it we see an 11-year-old boy visibly affected by the brain damage caused by the disease not detected in time and his smiling sister. two years that he has benefited from early diagnosis and leads a normal life thanks to the protective diet. An abysmal difference, a different destiny thanks to the analysis of a simple drop.
“We had three cases at hand that allowed us to draw the complete map,” Lendínez explains to elDiario.eswho recognizes the similarity between the staging of the documentary and the famous photograph of Dr. Følling’s time. The documentary shows us other cases of affected children and those parents who “weigh everything” on the scale, aware that any intake of proteins or fats that their children cannot process can lead to a crisis.
Every day that passes the risk of there being a new Judith or a new Izara is real, it is unfair and it has to end now
Pedro Lendinez
— Director of ‘Life in a Drop’
In April 2024, the President of the Government, Pedro Sánchez, announced the increase in the portfolio of detectable diseases from 7 to 11 and committed to doubling that number between now and the first quarter of 2025, until reaching 22, a step that the associations They are grateful but still see it as insufficient. Lendínez’s intention with the documentary is to make people better aware of this situation and to increase pressure to remedy it. “Although the map has changed, it is still incomplete,” says the director of the documentary. “And every day that passes the risk of there being a new Judith or a new Izara is real, it is unfair and it has to end now,” he concludes.
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