It is estimated that in Italy theSpinal Muscular Atrophy (SMA), affects around 850 people, most of whom are under the age of 16. It is in fact a rare genetic disease characterized by the degeneration of motor neurons in the spinal cord and brain stem, which causes muscle weakness and atrophy.
Diagnosed in the most severe form within the first months of life, the disease forces the little ones to need ventilatory and nutritional support as well as constant assistance for the achievement of fundamental motor milestones, like holding your head straight or just sitting.
L’emotional impact of the pathology on the families of affected children is very strong: and also for this reason the psychological support represents a fundamental aspect.
It arises from this premise Lupo tells about the SMA, an animated series in 6 episodes, promoted by Biogen and SMA Families and distributed exclusively by Amazon Prime Video. Taken from the homonymous collection of fables written by Jacopo Casiraghi, Head of the Psychology Service of NeMO Clinical Center from Milan and psychologist of the SMA Onlus Family Association, the cartoon aims to explain what it means to face spinal muscular atrophy every day, a disease that affects children, but also teenagers and adults. The protagonists of the series are the animals of the forest that come to life through the illustrations by Samuele Gaudio and at narrative voices of characters such as Fabio Volo (Thrush), Luca Ward (Wolf), Francesco Pannofino (Owl), the Trio Medusa (three Carpa brothers) and also La Pina. The famous rapper and deejay in the cartoon gives voice to Dulce, an orphaned snake that helps a friend, an aspiring painter, to overcome the difficulty of finding herself with muscles that become weaker every day, revealing to her the great value of diversity.
Here’s what La Pina told us in this interview.
What did you think when they proposed you to be part of the project Lupo tells about the SMA?
«I immediately accepted because when there is a weakness to defend, I personally find it very hard to say no. Perhaps because I at first feel partly fragile. I found this project a nice way to tell a problem that is certainly very complex but that in reality can also be addressed by working on others, or by informing people who know little about that disease. Those who live with a rare genetic disease already have a very high burden and do not have to fight for integration. Informing means giving those who suffer the possibility of being understood, seen and understood ».
From deejay to narrator of a fairy tale. What excited you the most about this experience?
“Playing a character who described his fatigue was a way to empathize with those living with this disease. I find that the authors did a wonderful job precisely because they started from the reality of things. Even when addressing children, I do not think that one should always, necessarily, cheer up, one can also simply inform, doing it in a sweet way. AND Lupo tells about the SMA succeeds very well in this intent ».
In your opinion, what is the most precious teaching that this cartoon gives?
“It is a teaching that I try to make my own every day: the sensitivity to understand others, to understand their difficulties, differences and also their weaknesses. Because this is the only way to make fragile people less at risk. Being understood is in fact one of the most important things of all, whatever the disability or diversity in question “.
She is particularly sensitive to issues related to the universe of childhood and in the past she has also worked with children. How important is it to be able to dialogue with them and to be able to find the words to explain even the small difficult topics?
«Communicating with children makes us hope in future generations that they will be more inclusive than those of now, especially considering what is happening today in Italy… I think it is important to try to make your own contribution to change things. I have no children, by my choice, but this does not prevent me from being sensitive about certain issues. Indeed, sometimes I believe that parents risk being overly protective of children and thus end up protecting them from things that the little ones should learn instead. It is on childhood that we can and must bet ».
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