Rafael and Melany brothers with rare diseases
PPL Causas

Rafael and Melany brothers with rare diseases

Fundraising for Rafael and Melany's intensive care and equipment for Melany

  • 2110

    raised

    60% of 3 500€

    74 backers

  • 31/10/2022

    Expired on

  • Not funded

    This project was unable to raise the required funds

Fundraising for Rafael and Melany's intensive care and equipment for Melany

António and Sónia Silva have three children. The two youngest Rafael, 14, and Melany, 4, are carriers of a rare genetic neuromuscular disease, Central Core Myopathy. The couple had to stop working to become caregivers for their two dependent children. Without State support, they appeal to solidarity to raise funds for rehabilitation therapies for their two children, as it is the only way to fight the disease.
Married for 16 years, António and Sónia have always dreamed of having a family. The two emigrated to Germany, where they worked in the restaurant industry. They managed to fulfill their dream of becoming parents. The eldest son, Rúben, was born 16 years ago in Germany and became the family's joy. He was a perfect baby and the experience was so good that after two years they went looking for the girl.
Fate turned them around and Sonia became pregnant again with a boy. This time, Rafael's pregnancy proved to be troubled. From the sixth month of pregnancy, Sonia began to feel strong contractions. Against all expectations Rafael was born at 24 weeks, at 6 months. A real miracle baby.
In the first month of life, Rafael was connected to machines in an incubator. Then the premature was transferred to a pediatric hospital where he stayed for another five months. In addition to all the implications of a baby born prematurely, Rafael showed signs of lack of movement in his arms and legs. Doctors discovered that Rafael was a carrier of a rare, genetic neuromuscular disease, Central Core Myopathy.
The couple and their two children returned to Portugal seven years ago. António and Sónia had to start over from scratch, leaving behind a thriving business and a stable life in Germany. Sónia became Rafael's caretaker, while her husband is now unemployed waiting for an abdominal operation. Rafeel started to be followed up at the Centro Materno Infantil do Porto, in orthopedics. The parents did everything for Rafael to have intensive physical therapy, speech therapy, in private clinics, since state support was practically nil.
4 years ago the couple had a girl, Melany. According to German doctors, this disease, genetically inherited from the mother, would not affect if it were a girl, only the boys. After the girl's birth, due to the clinical history, doctors performed tests to detect the disease. At 2 months they discovered that Melany had the same disease as her brother Rafael. This came to shake the family again. «Two cases in the same family means surrendering to them and never giving up» and for that we ask for support from those who can help us

 

 

About the author

We are a couple whose motive in this world is to take care of our children, we are people who live only for them 24 hours a day, our biggest fear is the day when our old age arrives and our children will be helpless, from what we see now while support for these special children is very small, they urgently need intensive therapies. That's why we count on all of you so that with other special therapies at least one day you can walk by your own means, thank you very much for contributing ❤️

Budget and due dates

The value will be for intensive rehabilitation therapies for the two brothers, each session costs 30 eur per hour, doing 3 hours each per week, gives a total of 180 eur per week plus travel to the port

  • Thank you from the heart

    Invest with
    5€ or more

    Thank you from the heart

    As we do not have the financial means to offer a reward for your generosity , it will always be a big and sincere thank you from the bottom of my heart .

    14 backers

  • Invest with
    10€ or more

    Kisses from brothers Rafael and Melany

    Obrigado a todos pelo apoio

    23 backers

  • Invest with
    20€ or more

    A Brothers Souvenir Bracelet

    A symbolic bracelet to remember Rafael and Melany

    35 backers

Fri, 29/03/2024 - 08:52

Tue, 01/11/2022 - 23:37

Payout completed

The raised funds have been transferred to the campaign owner

31/10/2022

Campaign ended

The campaign failed to raise the total amount

Mon, 24/10/2022 - 12:19

Está a terminar e sem objetivo atingido 😔

Pedimos por favor que ajudem a nossa causa, se não conseguirem monetariamente, basta uma simples partilha para que outras pessoas possam ver e ajudar, sabemos que estamos em tem...

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Thu, 13/10/2022 - 18:58

50% reached

We've just achieved half the target! The glass is now more full than empty ;)

Thu, 13/10/2022 - 13:12

Partilha solidária

Bom dia a todos, queríamos pedir a todos os apoiantes um favor muito importante, quem puder que partilhe a nossa PPL, o valor não foi atingido e como estão muitos apoiantes que ...

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Mon, 26/09/2022 - 21:13

We're now 20

We reached the first 20 backers. Let's keep up!

Mon, 26/09/2022 - 17:26

First five backers

We've gathered the first 5 backers. Hurray!

Campaign launched

14/09/2022

Join us so you can take a part in this campaign. Register

  • António Silva

    Está a terminar e sem objetivo atingido 😔

    Pedimos por favor que ajudem a nossa causa, se não conseguirem monetariamente, basta uma simples partilha para que outras pessoas possam ver e ajudar, sabemos que estamos em tempos difíceis, mas o mínimo de cada um acreditem que faz toda a diferença, partilhem por favor ao máximo, há várias formas de ajudar, muito obrigado a todos beijinhos do Rafael e da Melany

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  • António Silva

    Partilha solidária

    Bom dia a todos, queríamos pedir a todos os apoiantes um favor muito importante, quem puder que partilhe a nossa PPL, o valor não foi atingido e como estão muitos apoiantes que colocaram não no incondicional ao não atingir o objetivo o valor ainda será muito menor como podem ver na imagem que anexamos, assim partilhando e todos juntos conseguimos chegar ao valor do objetivo porque esse valor é o valor que a clínica nos pediu para que os nossos filhos pudessem fazer fisioterapias intensivas e especializadas nesta doença Miopatia central core, pedimos isto de coração à quem já apoiou por favor partilhem no vosso Facebook, Instagram, etc assim acreditamos que todos juntos conseguimos que o Rafael e a Melany consigam fazer as tão importantes terapias, deixamos também o nosso mbway 936365207 caso alguém queira ajudar porque várias pessoas nos fizeram o pedido do mbway, muito obrigado a todos por todo o apoio e ajuda neste momento que está a ser muito difícil para todos os portugueses e que mesmo assim continuam a ajudar estas nossas crianças, enquanto o estado português sabe destes casos e não ajudam quem realmente precisa, beijinhos para todos do Rafael e da Melany ❤️❤️🙏🙏❤️❤️

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  • António SilvaAntónio Silva

    🙏🙏🙏❤️❤️❤️

    🙏🙏🙏❤️❤️❤️

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