It is believed that the life of children is easy, and that time will be between games and dreams. They are free, unhurriedly living and innocence prevents them sorrows and clouds them realities.
But for Cristian Rodriguez, 14, childhood was not so simple, however, some of their dreams were postponed and others were discarded; he missed a few moments the beginning of his adolescence; I had to leave Chiquinquirá, his hometown, and delivered his days, at least in the last two years, the treatment of the disease that afflicts.
In mid-2014, and after a year of failed medical tests, he was diagnosed with an aggressive brain cancer, and a few months later with metastases in the spine. Has six surgeries on behalf of this disease and its life expectancy, experts say, it is short.
He always wanted to be a footballer, but the gradual loss of their forces and care with your body must have made him think of a plan b. "I think I'll go for acting," he says smiling. "I like to pay attention to me and be recognized," he insists.
Migraine. That was always the diagnosis Cristian received in Chiquinquirá when consulted with the doctor once a month EPS before the terrible headaches, blurred vision, nosebleeds, and vomiting that affected him.
Beyond giving painkillers, recommend some home remedies and prescribe glasses, nothing happened with the case of Cristian. Only when their mobility began to be affected, one doctor ordered an MRI, which ultimately was key for a diagnosis.
The day of bad news
Mary, 30, is the mother of Cristian; his only companion in this battle against cancer. He says he was lucky to find on the way to people who have tended her hand, but now fears that the delay of its EPS in the processes put at risk the life of your child.
For sample is the resonance that authorized him a year and a half ago was ordered in Bogota. With no other option, mother and son they had to travel by bus to the capital; there the wait was long because the equipment was damaged to practice.
"Tell me what my son has. Whatever it is, I have a right to know, "he begged medical Fury who gave the test results, but she merely said that the situation was delicate Cristian and needed to act fast.
With nerves on edge, and suspecting the worst, Jury returned with his son that day to Chiquinquirá. There an oncology read resonance and sent Cristian to a hospital in Tunja, where they could treat it.
Mary's world was plunged into uncertainty that led her to forget everything and everyone, even their two small children who waited in the house.
Cristian, then 12, did not know what was happening and thought that within days would return to his normal routine.
"I thought I had a very strong flu and doctors would cure me fast. Had the illusion of going to Chiquinquirá "says Cristian.
But the next day Mary was informed that the state of her son was quite distressing and, worse, that was just the beginning of a tough fight for survival. "They said I had brain cancer and the chances to live were very few," he says haltingly.
He faced alone the bad news, not even dared to tell the own Cristian on their status; in fact, he did not but almost a year later. "My family are my three children. I have more support than some individuals, "says the woman.
Cristian underwent emergency surgery to remove his malignant tumor, and after 12 hours of proceedings entered the Intensive Care Unit. From there came a month later, direct access to Bogota, because Curry told that the EPS could not guarantee treatment in Tunja Cristian required; in fact, he was informed that his son would be referred to an IPS with which this company does have agreements in Pereira or Bogotá.
Goodbye, Chiquinquirá
The trip to the capital did not have time to Nury returning to Chiquinquirá to see her two children, let alone put their heads aware of the situation. "I lost the work he had helping in family homes, with which all my life I kept my chinos" , he says.
Again, the way to Bogota had to be by bus, even when Cristian was very delicate because the ambulance service had requested that still lingered a few days and the care he needed did not give expected.Arriving in Bogota, Cristian entered intensive care at another hospital, where he underwent further surgery. Bury, meanwhile, returned to Chiquinquirá few days later to deliver the house in which they lived in rent and tell at school Cristian this would not return. At this point I had to make the difficult decision to leave her two children in the Colombian Institute of Family Welfare (ICBF) of the municipality, to travel back to the capital. "I had no other. I had no one to leave them and without work, he had no money to take with me, "he says.
Eight days later, the ICBF Nury granted to transport their small to Bogota. So it would be easier without neglecting Cristian visit.
In those days, Mary received word that cancer metastasis Cristian had done in his column. The child underwent 30 sessions of radiation therapy during their hospital stay. After two months he was discharged and must continue treatment for another year.
During all that time and to date, Mary, and her son has lived in foundations which have given them lodging and food.
Less than a month ago, amid so many predicaments and bad news, Bury recovered her other two children and got the directors of the foundation to let her live with them. Thus, no longer at home and not in their city, but they are together again.
Months without a doctor
Not only the physical aspect of Cristian changed after treatment, also his character is transformed and is now cranky and irascible, as he himself confesses.
But resistance has also become more positive Cristian. Said to believe that everything will be fine is your best choice and even chides his mother because waiver saw lately. "We must move forward and think about the good memories," says this little generous smile and expressive eyes.
But the anguish of Mary has a reason. Five months ago that Cristian does not see what a doctor and in the last eight will have changed twice oncologist and hospital. The last time I saw him was a specialist in September last year and since then have ordered more treatments.
"I am concerned that so many doctors caught my son if they do not know everything that happened. The last doctor who saw him said Cristian was fine, and when I asked about the column was amazed and said he did not know of metastasis, "said Nury.
Since September Nury requested authorization Saludvida EPS 14 tests oncologist ordered his son, but only up to 15 days, thanks to a complaint with the Superintendent of Health, were approved.
However, four of the tests could not be carried out because the authorizations were poorly made, including a resonance.
A week ago, after TIME will contact Saludvida, the process of missing tests will be speeded up and the results were delivered in record time. Unfortunately, the laboratories did not go well at all and, according Nury, liver and Cristian column are quite affected by the disease.
"Maybe if I had not taken so long in EPS this was not happening," laments Mary, who sees his world crumble before his eyes. These days, she and her son begin a new and twisty race against time amid red tape and delays.
Cristian is aware that although positive with their situation, can not alone. Every night, he says, he asks God to give him the strength to continue. And if someone in the government is reading your story, you also want to ask for help:
"Do more hospitals and think about childhood. Attend getting better children who, like me, suffering from cancer. I'm not the only one who has dreams and wants to meet them, we are many in Colombia, "concludes Cristian.
What the EPS says?
After being consulted by this newspaper, Saludvida EPS said that this entity "has done everything required and will continue to monitor all that apply to guarantee the right to health of the child".
However, beyond informing that from 2014 to date, has authorized 141 procedures for cancer treatment Cristian, the EPS did not rule on the struts complaints about that time investigated him late diagnosis, lack of coverage in Chiquinquirá and Tunja, and delay and failure authorizations.
Saludvida assured that this medium will aware of the child's situation to ensure immediate and effective attention. The company also noted that "in Colombia is important to move forward in a single digital medical record to ensure better monitoring of patients.
the care of children with cancer in Colombia concerned
According to figures in a report of 2015 of the National Institute of Health (NIH), the world each year 160,000 cases of children with cancer present, with leukemia the most common type, followed by malignant tumors of the brain and nervous system .
In Colombia each year, 1,300 new cases are diagnosed. Of that total, according to figures from the Colombian Observatory of Childhood Cancer (Oct), "little more than 50 percent have a survival rate exceeding 5 and 10 years, ie, that for every 10 children, only 5 may survive ".
Two years ago it was defined Route of care for children with presumed or diagnosed with leukemia. Through Resolution 418 of 2014, the Ministry of Health established the responsibilities of the various health authorities, departmental and municipal authorities to ensure comprehensive care for children with this disease.
However, to date continue to be recorded dozens of cases of cancer patients under age 18 who have not been diagnosed in time and do not have an effective and timely treatment.
Yolima Mendez, president of Rice, said: "still the EPS, IPS, local authorities, Supersalud and National Institute of Health, among others, have great ignorance against Care Route".
Mendez said that the efforts of the Supersalud in recent years are not unknown to optimize care in cases of childhood cancer, but says, "there is still much weakness in enforcing the rule".
After track 59 cases of children diagnosed with cancer in Bogotá, the Rice showed that 41 of these patients faced a barrier to access to health care and 30 had to impose at least one legal action to obtain authorization services.
According to reports Once in Bogota has improved care of children with cancer, but in other regions of the country access barriers to health and cases dramatic where children are moved from one place to another for several days are still present are denied care in some hospitals, the diagnosis is delayed and also have to wait for several weeks starting treatment.
"On the Caribbean coast, for example, the situation is complicated. There are not the regulations are respected and there is no consideration for the right to decent health care for these children. It is failing, even in reporting new cases, "says Mendez.
Supersalud takes action
The National Health announced a couple of weeks to start implementing a stricter tool to ensure compliance with the Care Walking cancer patients ago.
According to the superintendent Norman Julio Muñoz, from now precautionary measures obliging the EPS and its legal to comply as soon as possible, with the full, effective and timely care of cancer patients representatives will be imposed. If not carried out the orders, pecuniary penalties that can reach 150 million pesos will apply.
In fact, the February 19 injunction was imposed on the EPS Capital Health, New EPS, Cruz Blanca Salud Total, Coomera, and Emssanar, for failing to comply with the route of attention.
In this process, and after the deadline of Supervalu, he began a punitive process Emsannar EPS and its legal representative contempt for violating the injunction.
Muñoz insists that Supervalu has been developing educational and punitive programs for the rights of patients, but also needs the help of citizens to report non-compliance. "Through a call, a tweet, a letter; He let us know what's going to help, "he said