The family of an 8-year-old boy from Murcia who suffers from an incurable tumor in the brain stem calls for more research aimed at finding new treatments
In mid-September, the family of Martín, an 8-year-old boy who lives in Molina de Segura, began to realize that something was wrong. “We saw that he had a kind of facial paralysis, but the doctors thought it was a nerve impingement,” recalls his brother, Rafa López. That happened overnight: “The previous week we had both gone to Terra Natura, Martín was as usual.” On October 10, the boy started vomiting, and they went to the ER. It looked like a stomach virus, but the doctor went off alarm bells when she realized that Martín was losing his balance and coordination on the left side of his body. They did a CT scan, and there they discovered the seriousness of the situation: a diffuse intrinsic brainstem glioma (DIGP) had developed in his brainstem, a rare tumor with a low incidence and incurable.
The ‘shock’ was terrible. “They explained to us that life expectancy ranges from 5 to 24 months, but everything can end in a week,” explains Rafa. There is no possible surgery in such a delicate and compromised area. Focal radiotherapy is the treatment that has been shown to be the most effective, but with very limited prospects. Martín has also received chemotherapy sessions, and thanks to physiotherapy he has improved somewhat on a physical level, after he suffered a “bestial acceleration” of the disease after his admission in October, with an “almost total loss of coordination on the right side”. left”.
After the enormous initial shock, Martín’s family reflected on how to deal with this whole situation. They came to the conclusion that they would not sit around, that they would fight for further investigation. Advances in this tumor are far behind those achieved in other much more prevalent cancers. «In Spain there are about 40 or 50 children affected, but in the world there are many more. In addition, they are not numbers, they are children who need treatment ”, emphasizes Rafa López. They are aware that it is very difficult for new therapies to arrive in time for Martín, but they do believe that there may be hope for those who come after. That’s why they started a
signature campaign on ‘change.org’ under the slogan ‘Martíncannotpuedesolo’
“We do not claim funds, but we turn to the Ministry of Science to increase investment in research,” explains the family. I don’t know if my brother is going to be with me next month, but I can’t let this go for nothing. Hopefully my brother’s life will help the following children with cancer to have a better quality of life, or greater hope. That is the only thing we can do as a family”, reflects Rafa.
Some initiatives
In Spain there are already some initiatives to reinforce research in DIGP. The
background Alicia Pueyo, linked to the Sant Joan de Deu Foundation, has been seeking funding for clinical trials since 2008. The initiative was also based on the painful experience of some parents who lost their daughter, Alicia Pueyo, to this cancer. The Sant Joan de Deu Hospital, a reference in oncology in Spain, has carried out a clinical trial with immunotherapy, pending results.
In his request through ‘change.org’, which has already been supported by nearly 4,000 people, Martín’s family recalls that investment in R&D in Spain is still below the European average and the objectives set. They ask for an increase, and that “research on childhood cancer be prioritized.” Martín’s parents and siblings recognize the “effort” of doctors, nurses and assistants, who in La Arrixaca have devoted themselves to the little one. But the professionals cannot cure him, neither him nor other children like him, because at the moment there are no treatments available for it. For this reason, they demand more science for Martín, and for all children with cancer.
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