Hello dear families,
We are very happy to introduce ourselves to you here. We are Mario, Ursina, Julia, and Giada, and we live in Switzerland.
Julia was born on March 9, 2014, and Giada on July 28, 2017. Our family happiness was complete. However, Julia did not develop like a neurotypical child. She took longer to do everything, but still reached milestones such as walking and talking, so we didn’t worry too much. Some children just need a little more time.
It was only when we received Julia’s diagnosis of MPS3A in 2019 that our world fell apart. Like almost all affected families, we had never heard of the disease before. That initial period was difficult, marked by so many uncertainties and questions and by endless grief. We read a lot, gathered information, talked to other affected families, while learning to live in the moment and to cherish every word Julia said, every laugh, every second of our lives, and to hold them close in our hearts.
Julia is almost twelve years old now. She no longer speaks, but understands three languages and loves it when people talk to her and include her in everything, sing her favorite nursery rhymes from her and have fun with her. Julia needs our help walking, but loves her daily walks and hates her wheelchair. She doesn’t like sitting or lying down at all, prefers to be outside and meet people.
Every day, we hope for therapy for Julia and all children with Sanfilippo syndrome, and we will never give up this hope, because it sustains us and gives us courage and strength.
We are very happy to join the Team Sanfilippo family and admire the long-standing commitment of the association and the strong families behind it. Thank you for allowing us to be here and walk this path together with you.
Warmest wishes to you all from our hearts,
Ursina, Mario, Julia, & Giada
