Five months ago, eight-year-old Martin was diagnosed with a diffuse midline glioma with an H3 QM27 mutation, "the worst tumor in the brain" in children, says Isabel Muelas, his mother. With a survival rate of 1% and an average life expectancy of 12 months, the little one's disease advances without brake, so his mother asks for more investment in research for "all the 'martines' that will come".

It is a very aggressive, fast-growing cancer that appears in children between 5 and 10 years old. Isabel, despite showing great fortitude, assures that they feel "abandoned by the Administration" and with "a death sentence" towards their son. "They tell you that he dies and you wait sitting on the sofa giving him an experimental drug and little else. To wait for the tumor to go into progression to bury him, because the moment that happens, they die a month, "says this mother. Therefore, he calls for greater public involvement in this type of childhood cancer considered rare, since about 30 cases are diagnosed in Spain each year, but which has been known for half a century. "It is the government's fault that our oncologists have no options to give us and that they follow an obsolete protocol that is useless," he insists.

Martin's first symptoms appeared just six months ago, in September, with what seemed like simple conjunctivitis. His pediatrician sent him eye drops, but seeing that he was not improving, after several visits to the doctor, his family decided to take him to a private ophthalmologist who ruled out that the child had any eye problem.

Days later, to that problem was added some apathy and an unusual level of fatigue in the child, something that doctors blamed at the beginning of the course and the seasonal change. "There came a time when Martin also began to bend his mouth to one side. We took him back to the pediatrician and he told us that since he had autism diagnosed since he was 18 months old it could be a tic, but at the end of September part of his face fell off, he had no symmetry, and we went to the hospital, "recalls his mother.

At the Virgen de la Arrixaca University Clinical Hospital in Murcia he was diagnosed with Bell's palsy, a muscle impingement in the nerves of the face that is usually temporary. After that day there were three other visits to the hospital in which the doctors insisted on the same diagnosis, sent him a corticosteroid treatment and asked his mother for "patience" and "time" for his recovery.

Until October 19, after strong episodes of vomiting that in his health center blamed on "gastroenteritis", he returned to the hospital. That day he was seen by a fourth-year resident doctor who, after suspecting that there might be something else, asked him to come back the next day for a CT scan. This test, together with an MRI, yielded the terrible diagnosis: "There it was seen that Martin had a tumor that was between serious and very serious. We were told he had an inoperable brain tumor. I asked if my son was going to die and they told me to focus on the biopsy operation they were going to do, which was complicated," she explains.

The biopsy was what gave the tumor a name: diffuse midline glioma with H3 QM27 mutation. And, after this operation, the little one began to worsen drastically. He stopped walking and lost mobility in his trunk. That's when doctors told him that "this type of cancer is deadly, there are not even targeted therapies, the only option was radiotherapy and chemotherapy and it is a palliative treatment."

The doctors, he says, have told him that, beyond the radiotherapy and chemotherapy sessions he has received, "there is nothing else to do, they have no more means to give us." The reason is the lack of information about this disease. "The treatments that are being used for this type of cancer are 40 years old. Nothing has been advanced in this type of tumor," adds this mother who asks for a reference hospital for the disease.

A treatment of 10,300 euros

The lack of research has led Isabel to have to seek treatments on her own to minimally extend her son's life and improve his quality of life. "If you have 12 months to live, make it 12 months of quality," he says. After contacting the association Unidos contra el DIPG and learning about cases similar to that of her son, she contacted Ofelia Cruz, a specialist in childhood cancer at SJD Barcelona Children's Hospital. It was she who told him about an experimental treatment, ONC201, developed in Paris, which the oncologist who treats Martín in Murcia "practically did not even know".

As the little boy could not travel to Paris, Isabel says that she decided to buy the drug through Germany (where it is already marketed). The price: 10,300 euros for a three-month treatment that the family has had to finance without public help. The options: If it works, it could give you "more quality of life and extend your life by about four months."

And it is that Social Security covers them, according to account, three sessions of physio a week, the treatment with corticosteroids that the child receives and a weekly visit to the oncologist. The rest are on their own: "We had to leave everything. Martin is totally impaired, he needs two people to move him from the sofa to the bed, for everything. It's 100% dependent." Therefore, in February the family organized an event in Murcia in order to raise funds and managed to cover the 10,300 euros of the cost of Martin's treatment and donate 45,000 euros to the Alicia Pueyo Fund, which investigates this type of tumor.

His mother assures that Martin, despite his physical condition, is not aware of the situation. "He only talked about death once. He said he didn't want to die. I told him not to say that, that he is eight years old and that was not going to happen. He replied that he didn't want to turn nine at the time. He doesn't know, he's not aware of what he has," she explains.

More investment in R+D+i

Martin's case has had a great diffusion in social networks in recent weeks thanks, in part, to his brother Rafa, who shares the day to day of the little one on his Instagram account. He has opened a collection of signatures through change.org to ask the Ministry of Science and Innovation for more investment in R + D + i. "We are aware of the effort that wonderful doctors, nurses and assistants make for Martin and many others, but it is not enough if more is not invested in research. In this type of tumors with more reason, since our little ones do not survive and we can not stay without doing anything, "can be read in the petition.

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However, despite the public dimension of the case, her mother regrets that no public administration has contacted her. "No one has called me to ask if we need anything. Nothing. We only have the support of thousands of people at the private level and families who have already gone through this, "he says, and then make a direct appeal to the Government.

From his position, fully aware of his reality, he asks for more research for children who in the future will suffer from his son's illness. "It cannot be promised in the elections that Spain will match the investment in R + D + i to that of the rest of European countries and that it is a lie and we continue at 1.4% of GDP. It cannot be that there are childhood cancers that are abandoned, with zero euros of investment by the Government in the century in which we are. You can not allocate money to other causes when you have a pending battle like childhood cancer in which our children go bare-chested, without weapons to fight. They only have the love and affection of their family," he reflects. He also insists that his son's illness "has been known for 50 years", so "it is not a rare disease", but "a sentenced death".

Therefore, he assures that they are going to open a foundation in the name of his son in order to help "the children who will come", because "childhood cancer cannot be prevented. He arrives, knocks on the door and comes in."

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