- Murcia The despair of little Martin, with terminal cancer and "abandoned" by the Administration
A few weeks ago the 'influencer' Ceciarmy published a tweet asking Frank Cuesta if there would be any way for Martin to see him. It was a dream for him, who at the age of eight suffers from terminal cancer. And it was fulfilled yesterday. The television adventurer took a plane from Thailand, spent two hours talking to Martin in the living room of his house, and even invited him to visit him in Thailand. "He was with Martin as if he were one of the family. We were a little nervous, but he lay on the couch with Martin as if he were his brother or his cousin. They were holding hands and my son kissing him and taking off his cap," recalls Isabel Muelas, Martín's mother.
The little boy suffers from diffuse midline glioma with H3 QM27 mutation, one of the worst brain tumors in children. It is a cancer with a survival rate of 1% and an average life expectancy of 12 months.
His mother says that it came from the 'influencer' himself to post that message on his networks encouraging Frank Cuesta to visit Martín because he knew he loves animals and watches his videos on Youtube. "On the same day Frank sent Martin a personalized video from Thailand, showing him different animals, and told us that he was coming to see him on the 30th. And so he did," he says. For his family, Frank Cuesta's visit was like a breath of fresh air. "Martin is super off and yesterday he spent two hours talking to him. He showed him his stickers and he showed her his animals. We also needed to see him like that," he recalls.
Although the family knew about the adventurer's visit for weeks, until Monday they did not say anything to Martin "so as not to generate anxiety," says Isabel. The little boy, who had been excited about the visit for hours, hoped that Frank Cuesta would take home the animals with which he lives in Thailand. "He sees his videos on Youtube and imagined that he was going to come with the otter, the chinchilla and all his bugs, and when he saw him with nothing he said: you have not brought me the chinchillas," he recalls, smiling.
After spending a couple of hours with Martín, Isabel says that she herself had a conversation with Frank Cuesta in which the television adventurer insisted that she try to take Martín to his house in Thailand, "but it is a utopia right now for how Martín is," she acknowledges. Cuesta insisted that "things have to be done, you don't have to think about them" because "it's the passion of the kid." "He wanted to tell me to seize the moment," he recalls, but the reality is that Martin's medical situation has worsened in the last week.
Although the medical tests that were done in April showed a decrease in the brain tumor he suffers, in the last week Martin has worsened and is waiting for a new resonance to clarify the reason for these new symptoms. There are several possibilities, it could be that the tumor has entered the phase of progression, in which case the progression of the disease is very fast, or that the tumor has caused a cerebral edema that causes this symptomatology. "It's very regular. He has stopped moving his right hand and is choking, choking on his own saliva. It's not the Martin of a week ago," says his mother.
In case the cancer was in progression, the idea of the family, with the support of its oncologist, is to look for a clinical trial "desperate" anywhere in Spain, even if it is focused on investigating other types of brain tumors. "If it is progressing, we are talking about a life expectancy of two or three months," says Isabel. In addition, your oncologist assesses the possibility of resuming radiation therapy.
They demand more investment in R + D + i
With the aim of raising funds for the treatment of Martin – which costs 10,300 euros – and help finance a clinical study on DIPG in Spain, on June 4 the family has organized a charity event in Molina del Segura. The clinical study, whose implementation has already begun, could be ready by January 2024, but that date for Martín "is a lifetime", so they want to try to advance it as much as possible. "If the government wanted to open the studio instead of driving us parents crazy, my son would still have a chance to live," he says.
"The goal is to raise money for research, to see how far we can go with my son and with any other child, because I don't know if Martin will do anything," he says.
Months ago the family opened a change.org to ask the Ministry of Science and Innovation for more investment in R + D + i to be able to investigate cancers like their son's. "It's very unfair. You have to be lucky to die: that you get a cancer in which there are studies and treatments. If you get cancer like my son's, you already have a death sentence. And all cancers deserve, at least, to be able to fight a battle," he says, and then insists that "all cancers deserve studies at the same level."
- Frank Cuesta
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