Five months ago to the little one Martin8 years old, was diagnosed with what is termed the «worst brain tumor» in children. It is a Diffuse midline glioma with the H3 QM27 mutation, a cancer with a 1% survival rate and an average life expectancy of 12 months. The story comes from Spain, told by the newspaper El Mundo. the baby’s mother, Isabel Muelascomplaint of having been “abandoned by the Administration” with “a death sentence” against her son.
What struck little Martìn is a very aggressive and rapidly growing tumour, which appears in children between 5 and 10 years of age. Muelas recounts: «They tell you that he is dying and you can only wait sitting on the sofa, give him an experimental drug and little else. Waiting for the tumor to progress to bury him, because when that happens, they die within a month.”
Martìn, the first symptoms of the tumor
The first symptoms appeared only six months ago, in September, with what appeared to be simple conjunctivitis. The pediatrician prescribed eye drops, but since Martìn didn’t improve, after several visits to the doctor, the family decided to take him to a private ophthalmologist who ruled out that the little one had any problems with her eyes.
Days later, a certain apathy and an unusual level of fatigue were added to these symptoms, which doctors attributed to the start of school and the change of season. «Martín at one point began to tilt his mouth to one side. We took him to the pediatrician again and he told us that since he was diagnosed with autism at 18 months old, it could have been a tic, but at the end of September part of his face collapsed, he had no symmetry, and we went to the hospital.” remembers his mother.
At the University Clinical Hospital Virgin of the Arrixaca of Murcia, he was diagnosed with Bell’s palsy, a muscle blockage of the nerves in the face that is usually temporary. After that day there were three more hospital visits in which the doctors insisted on the same diagnosis, asking the mother for “patience” and “time” for her recovery.
The diagnosis
Until October 19, after strong episodes of vomiting that the health center had attributed to “gastroenteritis”, he returned to the hospital again. He was seen by a doctor that day who, having suspected there might be something else, asked him to come back the next day for a CT scan. This examination, together with an MRI, produced the terrible diagnosis: “There it was seen that Martín had a tumor between serious and very serious. We were told he had an inoperable brain tumor».
The biopsy then gave the cancer a name: diffuse midline glioma with the H3 QM27 mutation. After the diagnosis Martìn got even worse and stopped walking. “They told us that this type of cancer is deadly, there are not even targeted therapies,” recalls Muelas. The doctors, the woman says, explained to her that, apart from radiotherapy and chemotherapy sessions, “there’s nothing left to do, they have no more means to give us”. The reason is the lack of information about this disease. “The treatments that are used for this type of cancer are 40 years old. No progress has been made in this type of tumor », she explains.
The experimental drug
Thus Martìn’s family turned to an association, which recommended an experimental drug sold in Germania. It costs 10,300 euros and the child’s parents had to buy it without public aid. “If he has 12 months left to live, let’s make it 12 months of quality,” says the mother. Isabel Muelas is now fighting for the competent authorities to become aware of the seriousness of this disease and to be able to finance studies on treatments, so that “there will never be another Martìn again”.