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Hello,
I am from Guayaquil, Ecuador. I'm a mother and father of 3 children. My name is Leticia.
In January 2018, my second son Gabriel, was diagnosed with Multiple Sclerosis (he is only 19 years old), this is a neurological immune suppressive and degenerative disease ... it attacks the central nervous system causing outbreaks that leave injuries.
Apparently the disease was started attacking my son when he was 12, but since it is a silent disease, it was not until 02/01/2018 that it caused my son to collapse, dawning with the right part of his body numb, From that moment his life has becomes very difficult. The first time he was hospitalized, it was for about 4 months, 30 days alone was spent on the ICU because suffered from large number of injuries on his brain and along his spine. He had many seizures that lasted up to 50 minutes. Because he could not control the spasms, the doctors decided to induce him a coma and tubing him so that his brain could take a rest.
MS (Multiple Sclerosis) has led him to be hospitalized more than once, and he had to go through innumerable moments of pain ... he currently has 76% disability, mainly as mobility disability.
At the moment, the Interferon Rebif is administered on Monday, Wednesday and Friday. This keeps him feeling bad all the time, since his symptoms are so strong that making him him tired all the time. He has no energy, exhausted, with continuous severe headaches since the last injection until the next days ... and due to the discontinuity of the treatment on Sunday, he could have more discomfort in his body. Thus, Gabriel has been maintained under that state of health for more than two years ... and even so, the State does not approve the necessary medication to improve his quality of life. They just said, "No budget."
At the moment we are still waiting for the government here in Ecuador, to approve a more latest medicine, Ocrevus, to treat this disease, since the Interferon that my son is administering, is not an adequate treatment for his advanced disease.
The government does not approve the Ocrevus (because there is no budget) that my son needs, and now it is impossible to access hospitals due to the pandemic.
In this place, the cost of healthcare is very high. Not to mention that to treat the disease, we need some therapies, special diet, examinations and other extra medications that are not covered by the government. At the same time, due to my limited economy I cannot access particular assistance.
Gabriel's illness forced me to stop working so I can take care of him ... now it is very difficult for me to cover the expenses he needs. The public health system in Ecuador is unfortunately not the best, and my son does not have any private insurance.
I have requested help to the state, through channels such as bonds and state entities for vulnerable people. I have written directly to the Vice President of the State ... but they have denied our proposal in every direction, since here in my country they qualify people with rare catastrophic illnesses and/or disabilities to access help not based on how severe the disease is, in the short and in the long term, but based on his social and economy status. And unfortunately Gabriel does not qualify for his social and economy status.
Multiple Sclerosis here in Ecuador does not receive the necessary attention from the government, perhaps because its impact on the population is very low ... which makes people who suffer from it difficult to access help for (possibly not because of this). There are foundations, but not here in Guayaquil, who do not have advance medications and those that do exist are high in cost, making Multiple Sclerosis a very expensive disease.
Gabriel needs much more than $ 1,500 ... since December 2019, he is awaiting approval at the MRI hospital for his entire central nervous system scanning. Here these tests could cost us to almost $350 USD per session, and his admission are divided into 3 sessions. The ideal is to do these tests every 3 months, but he has been delay these examinations since last year.
I would be happy if you could use the [Help by sharing] button to share about my project!
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