The story of Serena
Hello everyone my name is Serena and I am the mother of a beautiful princess named Silvia. Silvia is almost 2 years and since she was only 5 months we understood something was going on with her, Silvia wasn’t holding her head and her body, she wasn’t playing, she never played. Our life was nothing like others family.
On October 13th 2020 doctors dignosed PNPT1, a gentetical rare disease, so rare that not even doctors could tell nothing about it. Silvia is growing and she is beautiful like a flower but she is suffering from this hypotonia in all body so she doesn’t walk, not even sit. We do gymnastics everyday and she is becoming strong but we still have a long way to go.Â
On February 17th we will meet a doctor in Rome that wants to do some checks on the baby and if everything goes fine Silvia will be THE FIRST BABY IN THE WORLD affected by PNPT1 to try this new drug and hopefully this could have the potential to help my baby and so many others around the world.
We can keep in touch.Â
For now I send you a big hug. Thank you for all you do.