It was in the wake of a tragic accident that Francesca Fedeli and Roberto d’Angelo founded Fight The Stroke. In 2011, Francesca had a difficult pregnancy and stayed bedridden for seven months. The delivery went seemingly well yet, unfortunately, ten days after Mario’s birth, the parents were told that their baby had suffered a stroke. After the trials of this complicated pregnancy, the parents felt discouraged. “We weren’t ready. We asked ourselves: ‘Why is this happening to us? What have we done wrong?’”
When the couple tried to find out more about the diagnosis or possible treatments, they discovered how hard it was to find suitable answers, whether from doctors or the scientific literature. After two years of oscillating between distress and anger, they eventually decided to take things into their own hands. Thus, the association Fight the Stroke was created to help all the little Marios of the world. In 2016, it became a social company.
Around 3.5 million children in the world have suffered from a stroke. The consequences vary depending on the cerebral area damaged by the stroke. The most frequent and most visible is physical disability. “For Mario, for example, the right brain was affected,” explains Francesca. “As a result, he cannot move his left side, whether the arm or the leg.”
A COMMUNITY OF FAMILIES
“Our first challenge was to get accepted by the medical community,” relates the mother. “We had an excellent relationship with public research institutions and the main Italian hospitals. But we were only two parents and we could feel a certain degree of scepticism on their end.” Little by little, the couple succeeded in building a cohesive community of pediatric stroke families. “We contacted renowned scientists who agreed to help us face this challenge. Thanks to a number of grants, we were able to travel a lot, only to discover there was a global lack of information and solutions on the subject.”
With Fight The Stroke, Francesca and her husband are raising awareness of perinatal and pediatric strokes. “We are working in particular on early diagnosis methods. We opened the first center dedicated to this problem in Italy, in the country’s largest hospital.” The two parents also work towards improving the long-term care that stroke victims require, since children who survived a stroke need rehabilitation throughout their life. This is what led to the creation of the Mirrorable program, to offer to others the treatment that Mario receives.
Mirrorable is an interactive platform accessible through a kit including a computer, a motion detector and a magic tricks box set. Delivered at the parents’ request, this kit enables children who survived a stroke to follow an Action Observation Treatment. Based on the activation of mirror neurons, this therapy was validated by scientists. “Each day, for four weeks, the kids settle down in front of the screen and watch a magician showing them magic tricks,” describes Francesca. “As they observe his gestures and try to repeat them, they re-educate their paralyzed hand and learn some movements.”
The digital interface evaluates their performance, congratulates them or encourages them to start over. The children also have the option to interact with a peer. “They connect to another child’s home through the platform, and repeat the magic tricks through the screen,” explains Francesca. “It enables them not only to activate their mirror neurons, but also to identify with the other kid.” Launched in 2016, this pilot program already received applications from fifty families. The program rests on three evaluation criteria: improvement of motor skills, participation and degree of connection between the “pairs” of children during the learning period. The results will be published at the end of the year. “I cannot reveal the details at this stage, but I can already tell you they are very promising,” assures Francesca.
For the two parents, the main objective is to make this program accessible to the largest number of families as soon as possible. To this end, they are studying the idea of selling their solution to other kinds of patients wanting to improve their motor skills. “This money would enable us to ensure that the children’s program remains free for pediatric stroke families.” When they reached the point where they ceased to consider their son’s condition as a problem, they learned a valuable life lesson, and they wish to share it with as many parents as they can.
By Perrine Massy