Dear People With Warm Hearth,
We are a small, simple family living in Transylvania, Romania. Our son’s dream came true when our second child, Baby Noel was born in July 2019. He always wanted a baby brother and now it was just a matter of time until they could run and play soccer together. Everybody was happy and our family felt complete.
Unfortunately when Noel was only 6 weeks old we started noticing some signs that suggested something is not right. He could not hold his head the way he was supposed to and he didn’t move his arms and legs the way it was expected from a baby his age. We visited several doctors and 3 weeks later, when his blood work results came back, we got some terrible news: our Baby Noel has SMA1. We were devastated.
This disease is fatal among babies unless they get a cure of Novartis medicine, which is called Zolgensma. This medicine is approved for infants under 2 years of age, and already available in the USA. Unfortunately in Europe patients have to pay for this medicine themselves. The price of this one shot injection is $ 2.1M. As a simple family unfortunately we can’t afford this on our own. We need your help to save the life of our baby!
When children with SMA1 get the Zolgensma medicine improvement in their development is seen almost right away. Our baby’s life can be saved! It would be heartbreaking not to be able to do it because of the lack of money. The amount we need is huge, but every small contribution helps reach that goal.
Please help us spread our story, help us with donations. Even a small amount can help to save our little Noel. Christmas is coming, the celebration of Hope, Love and Care, people helping each other bringing smile on each other’s face. The name of our child, Noel means Christmas. With your help this Christmas could bring the chance of life for Noel.