Life for Amelia

Our daughter Amelia was recently diagnosed with SMA type 1 ,a rare genetic disease that atrophies all the muscles in her body and leaves her powerless. The treatment that replaces the defective gene so that our little girl can have a normal life and that consists of a vaccine called Zolgensma, approx. 2 million usd, being the most expensive genetic treatment in the world at the moment.

The first symptoms appeared at the age of 2 months, but only recently, we found out about this disease, because the first neurologist did not know to recommend genetic testing to discover this unfortunate disease.

Amelia is a very sweet and smiling little girl, with a magnetic look that you fall in love with immediately, especially when she smiles. She is very attentive to what is going on around her, she follows her older brother with great interest when he plays near her and she smiles at him every time she hears his voice or he talks to her. He loves her immensely and kisses her all the time. Looking at them both fills our hearts with love and gratitude for having them.

It hurts so much to look at our child and not be able to help her, to know that there is treatment that can add missing gene but we cannot afford its cost.

That's why we need everyone's help to be able to raise the amount necessary to purchase and administer the gene therapy.

At this moment we start our journey to treat and give Amelia a better life .

Thank you in advance for your help and prays!