Uma Cura Para Luisa

A CURE FOR LUISA

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Em 8 Julho de 2013, nascia no Rio de Janeiro, Luisa Chaves, a nossa querida filha.

Luisa crescen e se desenvolveu normalmente como qualquer outra criança de sua idade, andou com 1 e 2 meses, começou a falar muitas palavras soltas, como, Papai, Mamãe, Vovô, Vovó, água, suco, biscoito e muitas outras, ou seja estava tudo caminhando bem, ao se aproximar dos 2 anos, Luisa começou apresentar um comportamento bem diferente do que estávamos acostumados, Luisa buscou o isolamento, ficava extremamente irritada e inquieta, já não falava mais, apenas balbuciava, ficou hiperativa e agressiva.

Luisa parecia estar totalmente desconectada do mundo, começou apresentar muitas estereotipias com as mãos ou seja, a nossa filha havia mudado totalmente da criança alegre e sorridente que nós todos conhecíamos, para uma criança triste. Procuramos o Neuropediatra que em sua primeira consulta, observou que a Luisa apresentava um comportamento com características do autismo, mas esse não seria um diagnostico conclusivo.

Os exames foram determinantes para o diagnóstico, o primeiro foi o EEG, que diagnosticou a minha princesa com a Síndrome Landau-Kleffner, e poucos meses depois veio a noticia que nos abalou muito, que foi o também diagnóstico de Síndrome de Rett.

Ficamos extremamente arrasados com os resultados, e os impactos terríveis que ambas as Síndromes podem causar em nossa filha, nossa princesa, nosso tudo, o pior foi ter que ouvir, "Lamento mas não temos Cura para Síndrome de Rett".

Foi quando achei o site da www.ReverseRett.org, li o máximo que pude e busquei o máximo que informações possíveis desta organização sem fins lucrativos, e para minha felicidade, descobri que como eu existem outras pessoas que não aceitam a frase "Não temos a cura".

A Reverse Rett já arrecadou milhões de dólares, graças a doação de muitas pessoas com o mesmo objetivo, conseguir desenvolver uma droga capaz de Curar as nossas meninas da Síndrome de Rett , por isso estamos pedindo o apóio das pessoas em nossa causa. Caros amigos e doadores, nós gostaríamos muito de contar com o apoio de vocês para que a nossa princesa Luisa e outras centenas de milhares de meninas como ela possam continuar com a missão maravilhosa, que é de ser FELIZ e de fazer as pessoas FELIZES.

A Luisa é a primeira menina Brasileira desta campanha e contará com o apóio de todos os Brasileiros e de povos de outras nacionalidades para conseguirmos as doações que ajudem a pesquisa para a cura.


ENGLISH TRANSLATION


On 8 July 2013, our dear daughter Luisa Chaves was born in Rio de Janeiro.

Luisa grew and developed like any other child, learning to walk and speak words such as Dad, Mom, Grandpa, Grandma, water, juice, and cookies. All was going well until she was 2 years old. Then our cheerful child began to present very different behavior. She sought isolation, was angry and restless, no longer spoke, and ran with no direction. Luisa suddenly seemed to be totally disconnected from the world around her. Our daughter had completely changed from the happy smiling child we all knew.

At first we were told by a pediatric neurologist that Luisa had autism, but further tests were needed to reach a final conclusion. The doctor suggested some possible syndromes that could cause this behavior, among them were Landau Kleffner Syndrome and Rett syndrome. Luisa was first diagnosed with Landau-Kleffner syndrome, and a few months later came the news that shocked us, which was that she also tested positive for Rett Syndrome. We were devastated. The worst was having to hear' “Sorry, we do not have a cure for Rett Syndrome''.

We researched, seeking not only to understand the terrible impact of Rett Syndrome, but also the progress being made on research into treatments and a cure. We were not satisfied with the phrase, “We do not have a cure.”

That's when I found a non-profit organization called the Rett Syndrome Research Trust (RSRT). To my happiness, I found that there are other people who do not accept that phrase. RSRT has raised millions of dollars, thanks to donations from many people with the same goal. We would love to have your support for our princess Luisa and for hundreds of thousands of other girls like her in Brazil and around the world to help them be free of Rett Syndrome and be HAPPY again.

Luisa is the first Brazilian girl to be doing a campaign for RSRT, and we hope you will support her to help advance the research to a cure.



What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.


Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world’s premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.


Supporters (16)

  1. BARBARA MEDEIROS 
    11 months ago
    $20
  2. Rafael Pires  
    11 months ago
    $50
  3. Luiz chaves 
    11 months ago
    $107
  4. Luiz chaves 
    11 months ago
    $200
  5. Maria Aparecida Boffelli 
    11 months ago
    $100
  6. Bruno Medeiros 
    11 months ago
    $35
  7. Mark Ulbrich 
    11 months ago
    $100
  8. Juliana Ulbrich 
    11 months ago
    $100
  9. Daniele Boffelli 
    11 months ago
    $100
  10. Simone Pinto 
    11 months ago
    $100
  11. Aline Boffelli Souza 
    11 months ago
    $50
  12. Aline Boffelli Souza 
    11 months ago
    $100
  13. Aline Boffelli Souza 
    11 months ago
    $100
  14. Mayra Moreira 
    11 months ago
    $100
  15. davi souza 
    11 months ago
    $100
  16. Luiz chaves 
    11 months ago
    $250

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