Tratamento Medico para Barbara ! Hope The Cure

Barbara, 18 anos, moradora de New Jersey!
Chegou aos EUA, a 02 anos atras com sua familia, em busca de conseguir o unico tratamento medico existente para a doenca de Niemann Pick B, doenca rara e progressiva, que desde do seu  nascimento,  afeta seus pulmoes, figado, baco e medula ossea!

No Brasil foram anos de luta , internacoes, cirurgias , tudo para que ela sobrevivesse aos sintomas.

Mesmo com todo esforco de sua familia, no Brasil ela nao pode ter acesso ao unico tratamento ainda em estudo sendo feito pelo FDA e nao restou outra alternativa, a nao ser juntar o pouco que restou no Brasil e vir para os EUA, implorar por ajuda !

Mas o milagre aconteceu!

Mesmo com muitas pessoas e situacoes, mostrando que seria quase impossivel, uma vez que o mundo parou por conta do COVID, recebemos uma ligacao do Hackensack Hospital- NJ, informando que o FDA, aprovou sua entrada no estudo e sim, ela tera seu tratamento aqui nos EUA!

Momento de muita emocao e esperancas para  Barbara e sua familia, que podera voltar a sonhar com um futuro sem dores e quem sabe com a cura total!

O tratamento em si e um pouco complexo, consiste em infusoes de enzimas em suas celulas, por via venosa, a cada 15 dias ! Algo parecido com uma quimioterapia!

O  FDA vai pagar pelas enzimas, pagamento feito ao laboratorio Genzyme, mas os custos medicos hospitalares , exames medicos fora do estudo, mesmo com Charity Care, devera ter custos! Ainda teremos custos de ida e vinda ao hospital, nao dirijo e nao tenho carro, mesmo com ajuda de amigos proximos, essas idas constantes, vai me fazer ter que diminuir o ritmo de trabalho!

Foram longos anos de dor, sofrimentos, medos e incertezas, dias e noites em hospitais, para fazer de tudo para que quando chegasse esse momento, a doenca estivesse estavel, para que ela pudesse ter essa chance de continuar vivendo lindamente!

Olhem para ela, e pensem! E se fosse minha filha? Sobrinha? Irma? O que eu faria?

Tenho certeza que faria o mesmo que eu!

Desistir nunca fez parte de nossas vidas, e mesmo quando fraquejei, ela me trouxe de volta a realidade, com sua docura, molecagem e muita, mas muita vontade de viver!!!!

Com amor e esperancas,

Rose, mae da Barbara!


English........


Barbara, 18, New Jersey resident!
He arrived in the USA, 2 years ago with his family, in search of obtaining the only existing medical treatment for Niemann Pick B disease, a rare and progressive disease, which since his birth, affects his lungs, liver, spleen and bone marrow !

In Brazil it was years of struggle, hospitalizations, surgeries, everything for her to survive her symptoms.

Even with all her family's efforts, in Brazil she cannot have access to the only treatment still being studied by the FDA and there was no other alternative, except to gather what little was left in Brazil and come to the USA, beg for help !

But the miracle happened!

Even with many people and situations, showing that it would be almost impossible, once the world stopped due to COVID, we received a call from Hackensack Hospital-NJ, informing us that the FDA, approved its entry in the study and yes, it will have its treatment here in the USA!

A moment of great emotion and hope for Barbara and her family, who will be able to dream of a future without pain and maybe with a total cure!

The treatment itself is a little complex, it consists of infusions of enzymes into your cells, intravenously, every 15 days! Something like chemotherapy!

The FDA will pay for the enzymes, a payment made to the Genzyme laboratory, but hospital medical costs, medical exams outside the study, even with Charity Care, must have costs! We still have costs of going to and from the hospital, I don't drive and I don't have a car, even with the help of close friends, these constant trips, will make me have to slow down the work pace!

It was long years of pain, suffering, fears and uncertainties, days and nights in hospitals, to do everything so that when this time came, the disease would be stable, so that she could have this chance to continue living beautifully!

Look at it, and think! What if she was my daughter? Niece? Sister? What I would do?

I'm sure you would do the same as me!

Giving up was never part of our lives, and even when I failed, she brought me back to reality, with her sweetness, grace and a lot, but a lot of desire to live !!!!

With love and hope,

Rose, mother of Barbara!
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Organizer

Rosangela Nascimento 
Organizer
Elizabeth, NJ
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