Life has not made things easy for Alison Montalvo de León, who suffers from conditions that force her to remain locked up in a room in her house, under insurmountable exhaustion, acute pain, and suffering constant crises that even leave her paralyzed. extreme sensitivity to noise and chemicals in the environment. But the 19-year-old girl just turned 19 refuses to lose her joy and stop fighting to achieve her dreams of, even with limitations, developing her artistic skills in painting and music as far as possible.
However, Alison is in a race against the clock and needs all the help possible to find a home “with greener and more remote homes” that can be properly equipped to meet her needs, before she suffers a crisis that cannot be achieved. overcome.
Alison’s nightmare, says her mother and “24/7 caregiver”, Sara de León, began in 2014 when she suffered “dengue fever that destabilized her entire immune system.”
Before that dengue fever, “Alison was a completely healthy babe. Until that moment he had had no problems. It was pure energy, I was a judoka and I practiced with the national team ”.
But that dengue fever sent her to a “well marked” hospitalization, with a high fever and blood loss to the extent that transfusions were considered. He had an improvement, but shortly thereafter he suffered anemia again and returned to the hospital in early 2015.
“It was something that was not explained, with many symptoms. They spoke to me about the lungs, the heart, the kidneys. We ended up with the hospital director, because Alison wanted to enter the Escuela Libre de Música and had to complete an examination of the instrument, the transverse flute. I asked the principal for a letter to the school explaining what was happening. And I also asked him for an explanation of what was happening, because he didn’t understand what was happening to him, ”Sara said.
The hospital director then recommended three doctors. She chose a pediatrician, who after seeing what was happening “sends more laboratories, more specialists.”
“It was horrible. And in the meantime she had more episodes. So the doctor says, ‘I think it’s myalgic encephalomyelitis,’ and he tells me to calmly look for more information later. I get home and before going to bed I search the internet and read, and I couldn’t believe it. He told me ‘I’m going to ask the doctor’. That is the first reaction. You say, it can’t be, it can’t be this. One cannot believe it. But over time I realized that the doctor was right, “he added.
His reaction was no wonder, since myalgic encephalomyelitis, or chronic fatigue syndrome as it is also known, is a chronic disease whose cause is not yet understood with certainty, which affects various body systems such as the immune, endocrine and neurological, and causes insurmountable and persistent fatigue, as well as muscle pain, fever, disorientation, loss of concentration and memory, inability to make physical efforts, intolerance to stress, noise, among other difficulties.
With that painting, many challenges still awaited him, including some that would have to do with the lack of empathy of certain people.
By then Alison finally managed to be admitted to the Escuela Libre de Música, after passing the exam with “a very high level.” But “everything was very difficult, because he did not have reasonable accommodations and had to leave. It was practically an expulsion from school ”.
Alison herself recalls that “there were good teachers, but others who did not help at all. They made me climb stairs ”. However, she says she is grateful “because I learned a lot.”
But her mother has a more bitter memory and assures that “if they had made arrangements, that she did not have to climb stairs, that they gave her the elevator key, perhaps she would have had more energy and would not have had relapses. But no, it was horrible, they sat her on the floor, she crying. And he was not the word of the day, you cannot do it, if you are sick you cannot, there is no time for sick people here. They even threatened to take me to the Department of Education. It was traumatizing. “
There was no choice but to find another place for Alison to teach, and with that began “another fight against the Department of Education, until finally we got a room for her here in Bayamón with all the accommodations she needed.”
“And I want that story to be known, because at the end of the day you can. It was possible, with a room just for her. It is something important, because that socialization, interacting, having friendships with people your age who think the same as you, that is important ”, said Sara.
The brutal scourge of Hurricane Maria and the dire days and months that followed caused Alison more trouble. With the noises of generators and the constant smell of fuel his sensitivity increased and he began to develop another condition.
“There were nights when I couldn’t move my body, I couldn’t even verbalize anything. It was a very strong fatigue. The best thing was to focus on being able to breathe and swallow, ”Alison recalled.
According to Sara, they began to notice that “he was getting intoxicated” and as soon as his father opened the container to pour gasoline into the plant “another crisis began, he lost coordination, he could not move, his skin burned”.
Months later, they made an appointment with a specialized clinic in Miami, not even knowing if Alison would be able to make the trip. In mid-2018, “we were able to make the medical trip, and there he was diagnosed with sensitivity (multiple chemistry). Then they called me to tell me how serious he was from poisoning his body with hydrocarbons, glyphosate, and other chemicals. The most serious are petroleum derivatives and pesticides, to the extent that he has so much in his body that the pediatrician says it is as if he were working by spraying ”.
With the new diagnosis, the recommendation was that he avoid exposure to gas stations, and that he live far away on expressways, roads, factory smoke and cars. All of this is practically impossible to achieve at your home in Bayamón.
“The recommendation was almost as if they told you that you have to demolish the house and make it new. He had to change everything to suit the environment, seal the windows. And this house has been built for many years ”, lamented Sara.
“We live in Bayamón and it is not a recommended area. We should move to a more rural area, with greener between house and house, “he added. “Here is a daily fight. If the neighbor left his car running in the carport, that affects him. If someone is spraying three houses down, they start to feel it and it hurts. If they are passing a trimer, the noise and the gasoline affect it ”.
Such is Alison’s situation that even if there is a large fire, even a distant one, it causes her problems. Recently, a resurfacing of nearby roads “left it serious.”
“She feels all those gases in her room, and her tachycardia begins and you have to put masks and air purifiers on her, and if she continues to poison herself, she becomes unconscious,” said Sara.
“We do not rest. At dawn I get other symptoms. I wake up in shock, my pulse is racing, ”Alison said.
Everything seems to indicate that now she will have a new diagnosis of yet another condition, “which is appearing”, although with the COVID-19 emergency they have not been able to do all the necessary tests on Alison.
“But they are giving him those tachycardias at night, that racing pulse. These events are being repeated every night, ”her mother expressed concerned.
“And now come those nights of terror, because they do not stop shooting pyrotechnics and she has to be locked up,” he added, lamenting that to make matters worse, some neighbors do not even make an effort to avoid causing more problems for their daughter.
“We are running against time. We have to do some home improvements that we cannot do. The ideal would be to move in, that Alison can have a separate room and all the necessary arrangements can be made, ”added Grace, Alison’s older sister.
“Here, if you have a crisis, I can’t ride it in the car, it doesn’t fit in the marquee, the wheelchair doesn’t fit. We need an adapted vehicle. The house is leaking, it has fungus. The kitchen is not adapted, the cabinet is falling. The bathroom also has problems. And you can’t make arrangements with her at home, ”Sara lamented in an anguished tone.
“That is why we are asking for help. That is why the urgency, because time passes and these exhibitions make it more and more serious. The fear is that one night will come with a crisis that you cannot overcome. We are under very great tension, “he insisted, reiterating the desire to be able to go and live in a place,” with greener, but not too deep in the mountains, because we have the problem of access to doctors, which cannot be a a place too far away, with too many curves, that all that affects it too ”.
Alison, however, preferred to end on a positive note, stating that “what I want is to be what I am. I do digital drawing, I make music, I compose, I started singing, I play the ukulele. I have made arrangements to learn to draw and sing, so that it does not consume so much energy, with a balance. What I want is not to stagnate, to achieve my goals of progressing as an artist ”.
He stated that any donation, no matter how much, would be more than welcome and appreciated.
“Even though I’m sick, I know I can. I look for courses on the internet to develop my art, I have learned in a self-taught way. Music has always been with me, accompanying me. I know you can, ”Alison insisted, with contagious enthusiasm. “With all these setbacks I have managed to make accommodations, develop myself, make music. Imagine if I get to be in a better place. Imagine what I could do if I am in a more comfortable place, without intoxication, without crisis ”.
If you want to help Alison achieve a better quality of life and achieve her dreams, you can find more information and how to contribute to the fund on her behalf on the portal www.todoporalison.com, or on the social networks of Twitter and Facebook in Todo por Alison.