July 30, 2021

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They request help for a three-year-old boy after being diagnosed with an unusual disease


Nicolás Torres Vélez is a three-year-old boy, who was growing healthy until a year and five months ago. However, an episode of fever for the month of February 2020 led him to be hospitalized in the intensive care unit and, since then, his life changed forever as well as the lives of all his loved ones.

“Nicolás was a totally normal and healthy boy, who ran, talked and everything. He developed a fever on February 11 and he had a fever for a week and on many occasions we took him to the hospital, he came out with mycoplasma, but he had already given him before and that sometimes stays in the body. He stayed all week until I took him to the Manatí Medical Center and they left him for observation because in the results everything went well. On Saturday, February 15, he began to have convulsions, so from there they transferred him to the intensive in the Puerto Rico Woman and Children and from there it all began, ”explained his mother, Nicole Vélez.

The young 29-year-old mother reported that that same day Nicolás was intubated because “it was like apnea and it left us.” The doctors decided to intubate him to protect him from any complications and began to perform a series of tests to confirm that it was not encephalitis or meningitis.

“At first, it was believed that they were fever seizures, but he started to convulse every hour, every half hour until he was left convulsing. About five days later an epilectologist came, who is the one who currently treats him, and she was the one who gave me the diagnosis that he had the FIRES Syndrome, which is the Febrile Infection-Related Epilepsy Syndrome (FIRES).

This epileptic syndrome due to febrile infection describes a potentially fatal acute epileptic encephalopathy, of very acute appearance, which develops in previously healthy children and adolescents, after the appearance of a non-specific febrile illness. Doctors told Velez that it is a rare type of catastrophic epilepsy, with an incidence of one in a million children.

“In Puerto Rico I have not heard of a case, I think Nicolás is the first. Of a million, unfortunately it was my turn, Nicolás. It is something very difficult to deal with. He was six months in intensive with a lot of antiepileptic drugs and sedation. The condition is very strong, it does not have a reason for it, that gives totally healthy children. Nicolás convulses 7 to 10 times a day and uses between 15 and 20 medications, they are every hour until 12:00 at night. He’s on an immunosuppressive drug and that has helped his seizures. He also has a device in his chest that is a VNS that stimulates the vagal nerve, that also helps him with his seizures, ”said the mother of another 5-year-old boy named Sebastián Torres.

According to science, this condition is not curable, so seizures can only be contained a little with medication. There is also no operation that can be performed to treat these cases, only to provide physical therapies, so Nicole focuses on giving a good quality of life to her little one, who has seen his motor and neurological capacity affected and is bedridden.

“He is going to suffer from this syndrome for life, it is as if his own antibodies attack his brain. These children are always going to convulse. In Nicolás’s case, his brainiac is badly damaged. He came out with hydrocephalus as well and is losing gray matter and that space is filling with fluid. But, he is more stable, he was discharged last year. Before, I left intensive care and Sunday and arrived on Monday because I was vomiting anticonvulsants and food because he has a tracheostomy and gastrostomy. Since he underwent surgery in May and underwent surgery, which is the Niessen fundoplication, they take his stomach and close it a bit and he cannot vomit, now he does not vomit his medications. That’s why I have it at home… thank God! ”.

However, Nicole assures that it is difficult for her to accept that her child will not be like before and that it is an extremely strong family process, which they did not see coming and cannot find an explanation. Still, the young mother hopes for a miracle from God.

“This has completely changed my life, I literally can’t even go to the store. My job right now is to be a mother 24/7. It’s horrible, in the sense that I want to take Nicolás to Old San Juan and I can’t because he’s immunocompromised, I can’t go out with them for a walk, I can’t take them out to a birthday party. This has also affected Sebastián because I don’t let him share much with other children either and sometimes he says to me: “Mom, I miss Nicolás a lot.” This has been hard for him too because his brother was his best friend, they were always together. He helps me, warns me when Nicolás convulses. The three of us sleep in the same room because I don’t dare to leave him alone because he has a sensor in his little foot that is always catching his pulse and oxygenation. We are always pending ”.

“This changes your life completely in the mental sense because you have a healthy baby who told you mom, who said I love you and he is there, he is alive with you, but I don’t know if he listens to me, he opens his eyes, but no he follows me. There are days when I sit down to look at photos and I start to think about what my life was like before, my life was to get up, make them breakfast, I left them at school, I went to work. He went out with them a lot for walks. When this happens you wonder why if Nicolás was a healthy child. This affects dad a lot too, but men process things differently. Nicolás was crazy with his father and he is in denial because he tells me: when Nicolás runs, when Nicolás walks and I tell him that the doctors tell you that you have to be aware that maybe he will not speak again, he will not walk again . I ask for a miracle every day, ”said the young woman from Manatí crying, who claims to be receiving psychological help to handle this abrupt process.

Due to the financial need that her family has, Vélez is trying to return to normality, since since she was 18 years old she worked as a pharmacy technician, but as a result of the illness of the youngest of her two children, she had to leave her job. Now Nicole seeks to help her mother, who is the one who helps her financially with the things that the child needs and give her a good quality of life.

“I’m trying to get my whole life back to normal. I had not been able to work for a year and five months, now I started working as a pharmacy technician and I am working four hours on Monday, Wednesday and Friday to start because it has been very difficult for me to pay for everything. It was very strong! I want the baby to be well, I want everything to be a little easier. Thank God that I have my house because I had inheritance money and I bought my house so that my children could have a safe roof. But I am very tight financially and since my mother is the one who is helping me, the economic situation is already looking difficult, ”Velez confessed.

In order to continue with the care that Nicolás requires, his mother needs a bus for the disabled with a ramp that costs $ 42,000. This vehicle would help you to position the child with his chair without having to carry him and be able to take him safely to his medical appointments that are constant.

“Right now I take him to his appointments in my bus, but it is a mission because I have to disassemble the saddle and mount it in my trunk and it weighs. I have to mount him in the car seat, which is almost useless and it would be easier for those buses that have a ramp that would only have to mount him on the bus and go to the appointment. There are times that while I carry it, it convulses me. I checked, but my bus (Jeep Grand Cherokee) cannot have the ramp modification done. In Caguas there is a place that has them, but it costs $ 42 thousand dollars. I have never been to ask for help, I have had people who have approached me, friends, and have made donations. But this is something necessary, it is not a luxury, it is a necessity, “said the single mother, who clarified that the father of her children, Jonathan Torres, has been present for her son at all times, and that it has been key to maintain a good relationship to be able to endure this test that life has put Nicolás.

In addition to obtaining this specialized vehicle, this family needs various hygiene products and medical effects that the plan does not cover, such as: gloves, pads, diapers, wet towels, gauze, alcohol and masks for the child’s tracheostomy. Anyone who wants to help this family to move forward in the face of this ordeal that they have had to face, can do so through ATH Móvil at 787-616-6174.



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