THE WORDS CARLOTTA CAN’T SAY
Carlotta speaks Spanish. She loves to sing, and loves studying with her computer. She lives in Fregene, next to the sea. So she goes for long walks with her family. These everyday things are very special. Very special, because Carlotta is a very special girl. She suffers from type I spinal muscular atrophy (SMA). This is the severest and most widespread form of this disease. Carlotta has her very own vocabulary of sounds and facial expressions by means of which she can communicate with those around her. She needs it because she’s been tracheotomised and can’t speak. For years and years, her mum and dad, Erica and Stefano, lived in fear that the time would come when their child had to be tracheotomised.
They soon realised that Carlotta wouldn’t need words. Not necessarily. Carlotta’s lively interest in the things happening around her life can be seen in her eyes. She is comforted by the love of her parents and the “three angels”, her three nurses, Giovanna, Ginka and Ginsi. Now, nothing looks impossible to her. Learning has become a game − both pleasurable and necessary. Thanks to these activities, the flame of hope can burn on.
Fondazione Telethon works shoulder to shoulder with families like Carlotta’s, in their struggles against neuromuscular diseases such as SMA. The search for a cure for genetic diseases is anything but easy. However, the answers may be just round the corner, so we won’t give up. We’ll do our best also to improve the living conditions of these patients. Hence the four Nemo clinical centres (in Milan, Messina, Arenzano and Rome), co-financed by Telethon, set up to provide comprehensive psychological and clinical care for families with children like Carlotta. Not a day goes by without Carlotta taking on the challenge of communicating with others. To do so, she must summon up all her determination, energy and strength, and the same commitment on the part of her immediate family and close relatives. With a small donation, you too can send a message to Carlotta and her family. Let Carlotta and her family know they are not alone in their struggle against SMA!
WHAT WE’RE DOING TO DEFEAT SPINAL MUSCULAR DISEASE
SMA appears in about 1 newborn child out of 10,000. It is the most widespread genetic cause of infant death. There are three types of SMA. Type 1 is the most serious condition, impacting about 50% of patients. To help children like Carlotta, and parents who ceaselessly assist their children so that they can live their lives as fully as possible, we decided to do more than finance ‘just’ research.
Thanks to a special competition, the “bando Telethon-Uildm”, we created a network of specialised clinical centres capable of providing care to neuromuscular patients. Our commitment is ongoing, thanks to the founding of clinical centres specialised in treating such patients. We want to provide people with concrete hope. Concrete hope for all children like Carlotta!