Company | Marseille – Sainte-Marguerite: a solidarity lottery to help little Chiara
Mischievous eyes, a communicative smile and unfailing courage. From the top of her 7 years, Chiara fights against the disease every day. Yet energetic and overflowing with joie de vivre, the little girl suffers from ponto-cerebellar hypoplasia. A rare genetic disease that mainly affects the brain, and more specifically the cerebellum. “It was when he entered the nursery, at the age of 3 months, that we discovered his motor and cerebral handicap.“, says Séverine Cassan-Alberinto, her mother, who had not suspected the slightest problem in Chiara’s development.”Yet I had three children, but I saw nothing“, she is moved.
Very quickly, the mother of the family moved heaven and earth to put a name on this handicap. “There was an 8-month wait at La Timone for a CT scan and an MRI“, she remembers.”So I took him to Paris where I was able to get an appointment within 15 days“. The verdict falls … and a whole life is turned upside down.”But we did not let ourselves be defeated, it is our temperament. I have done a lot of research on this disease and I have found that the more Chiara was stimulated, the more she realized her things.“, assures Séverine convinced by the”very good“results of intensive rehabilitation. The problem,”it is that in France one is very quickly limited. Physiotherapists do not accept Chiara up to twice a week and this is not enough“. Over the course of research,”I found a specialized center for children in Spain. There, they do 4 hours of physiotherapy every morning for two weeks. The children do a lot of different exercises, walking, working on the ground to build muscle, they review the support of the hands, handle a walker, it is very complete. And the progress is real“. Car even if”learning is long andthat it is often necessary to repeat things a certain number of times, everything that is acquired remains acquireds “. Result,”I see Chiara progressing, she has more stability, more balance and more confidence too. I know very well that she will not walk out of this center … But last February she learned to move around by holding on to the wall and today she is doing it. And that is a small victory“.
The only downside is the cost of this stay in this center for disabled children: 2,000 euros. “2,000 euros is the price for treatment. But with travel and accommodation the bill amounts to 4,000 euros“, the now single mother, a hairdresser by profession, slows down, who would like to go there twice a year on average to maximize the chances of seeing her daughter progress.”Now is the time to do it because afterwards she will grow up and it will be even more difficult“, Insists Séverine who has created” Hope with Chiara “, an association, as well as a Facebook page to help her daughter.
Touched by Chiara’s fight, Richard Prudhon, president of the CIQ of Sainte-Marguerite, decided to organize a lottery for the benefit of Chiara this Sunday at 2 p.m. at the Trioulet room … for a burst of solidarity.
To help Chiara, you can also make a donation to the association “Hope with Chiara” by going to its Facebook page.