SMAsh SMA for Camilla and her friends

SMAsh SMA for Camilla and her friends 

5,000 EUR for a theoretical-practical stage for families living with SMA

Today, I'm raising awareness of SMA and funds for a project organized by an Italian center called SAPRE, planned for June 2023.

The project is called “Mio Figlio ha una 4 Ruote 2023” (My kid has a 4 wheeler), which is a theoretical-practical stage for the SMA families of kids on a wheelchair. It represents a space for discussion, dialogue and relationships which aims to accompany the family in a guided journey to discover everything we can do. 

You can find here a short video of the last year’s edition: https://www.youtube.com/watch?v=JjlhUS_BSlU&t=4s

We need your help.

Support us by making a donation below: help us to make SAPRE’s motto 'it can be done' a reality instillingcourage and hope in our community of SMA families from all over the world.

More info on our family

Our 4-year-old daughter Camilla was born with a rare genetic disease called Spinal Muscular Atrophy type 1 or SMA1, that affects nerves and muscles, which leads to a generalized hypotonia. 

Camilla got the diagnosis when she was 3.5 months old. The doctor told us that infants with SMA1 have difficulty swallowing and sucking, they don’t meet typical milestones like holding up their heads or sitting. The natural history of the disease has an unfavorable prognosis, as muscles continue to weaken, children become more prone to respiratory infections and collapsed lungs (pneumothorax), ultimately leading to death before 2 years. 

We luckily had the opportunity to enter a clinical trial and Camilla was treated with the gene therapy (Zolgensma) when she was 4.5 months old. This drug was then approved by FDA some months after and it is now on the market (as the most expensive drug in the world - $2.1 million).

Thanks to this treatment, today Camilla is 4 years old, she is able to breath and eat on her own, write her name, make a lot of jokes and has also an intense social life (more intense than her parents’ one ;)). But all these results require constant efforts and energies from her and from us, and with time we have been trained to develop skills to be ready to cope with our everyday life.

We have received a lot of support from our families, friends, and colleagues, and also from this Italian center called SAPRE, which offers training programs to families of children suffering from various neuromuscular pathologies in order to be able to look after their kids at home with competence and efficiency.