Rafael and Melany brothers with rare diseases

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

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