Meet the little Danda
Daniel is a Brazilian baby who was born with a rare disease called Spinal Muscular Atrophy in its most severe form: SMA Type 1. Symptoms such as muscles weakness, difficulty swallowing and breathing distress, manifested before he was 6 months old. Daniel’s life has now turned into an arduous routine of different kinds of therapy. When Daniel was 6 months old he was hospitalized in the ICU for a long period of time due to pneumonia. He had a cardiopulmonary arrest and underwent a gastrostomy surgery for the placement of a probe, proper for feeding. Even with no cure or treatment available, Daniel, our “Danda”, found strength to overcome the traumatic intubation. But unfortunately he still depends on mechanical ventilation for the most part of the day for survival.
Today he lives in a hospice with 24 hours technical support. Every single day Daniel undergoes respiratory and motor physiotherapies, occupational therapy, speech therapy, medical and nursing visits, as well as change of insertion for the feeding tube. As if that weren’t enough, we also have to perform aspirations and cough machine sessions, to keep him well or to overcome intercurrences. What would be a simple cold for us is a real life battle for Daniel. But he is winning!
Now, more than ever, there’s hope. Recently, in the U.S., a medication called SPINRAZA has been approved for use. This medication has unbelievable effects and will allow Daniel to improve his swallowing, breathing and muscular strength, so he can live a better life!
However, the cost is extremely high, ranging from $125,000.00 to $175,000.00 per dose. Six doses are necessary in the first year of treatment and that is why we ask for your help. Show Daniel your love: contribute with any value and spread this stream of positivity. Help give Daniel a new life!
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- R$861,887.62 raised. Our goal: R$3,000,000 28.73%
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