My name is Francesca, proud mum of Mario, today 6 years old, who survived brain stroke at birth. I live in Italy and, out of my personal experience, I co-founded with my husband Roberto D’Angelo
“Fight The Stroke“ a social enterprise that today gathers a network of caregivers, doctors and experts around the theme of pediatric stroke. We want to create a better future for Mario and for all children like him and here we explain our reason why.
Welcome Francesca & Mario
Natalie: How did your journey begin with Mario? What was going on through your mind and heart when he was diagnosed, how did you deal with the fear?
Francesca: Mario was born one month in advance when he went through routine check-ups for preterm babies in NICU. It is here that we noticed, at ten days since birth, that something had happened to his brain. After the joy of giving birth, my husband and I had to face a stroke diagnosis and we went through many questions: why him? why us? As far as I knew, stroke had to happen to the elderly! I immediately started searching for solutions, I was craving to ‘fix him’. I experienced very little of the so-called “joys of maternity”, but I was obsessed by the strong will to help him, who was so helpless.
Natalie: What is the name of the condition that Mario has? Can you share with us a little more about it?
Francesca: Mario was affected by a type of brain stroke, called “ischemic stroke”: the blood flow to the right part of his brain was blocked due to blockage of a blood vessel. I discovered later that it can happen also when the baby is in his mother’s womb. The causes of pediatric stroke are still not clear in medicine because, despite the incidence of it (2-3 cases out of 1000 births), there is little data available for scientific studies. For Mario, the consequence is that he has left hemiplegia, a condition for which he has lower control of movements of the left side of his body. Due to the stroke, he also started having focal seizures by the age of 3.
Natalie: What are some words to describe Mario? What do you love about him?
Francesca: Mario has always been the inspirer of our journey as changemakers. My husband and I realized, just looking at him moving his first steps in rehabilitation, that we had to be a better mirror for Mario. He did not really feel his impaired hand as a disability as far as we were not worried while looking at him; showing our sadness or concentrating on the disease would lead us all to a dead track.
“I love his smile and his attitude as a fighter”
Natalie: You have created a fantastic social enterprise fightthestroke.org, can you tell us more about it?
Francesca: We founded Fight the Stroke with an international mission, to advocate for the rights of young stroke survivors worldwide. I moved from the desire to enable my son’s full potential to a large perspective to help all children like Mario – who are estimated to be more than 3.5M in the world.
The real turning point was the rehabilitation path called Action Observation Therapy that uses the potential of “mirror neurons”, the brain cells responsible for movements and empathy. Today we are at the core of our main project, Mirrorable, the first interactive platform that allows kids to do their rehabilitation at home in an easy way, through gaming.
Natalie: You and your husband Roberto featured in TED (amazing!!), Your talk has been featured over one million times! What opportunities and awareness has this created?
Francesca: The preparation of the talk was a therapeutic course, as a couple and as a family: we spent few weeks thinking of those 6 minutes of presentation. It was tough because we had to live again a sort of sense of failure, the discouragement we felt at the beginning, that for so long we had tried to remove. It was worth it and it was an important step in our journey as a family. From our own experience as parents, we began to think that we had better consider what we had as a gift and what we lacked as an opportunity for improvement. The Talk opened many opportunities: we received great support, encouragement, understanding.
“We did not really think that our story could move or transmit emotions even to those who did not have our problems, but we realized that anyone with children knows exactly what we have gone through, and they appreciated the strength of our reaction.”
Natalie: I’m passionate about the (special needs/medical needs) and self-care connection. Raising a child with a medical condition or diagnosis can bring some big challenges, how did you cope? Are there any self-care practices that helped you on your journey?
Francesca: I always think about how lucky I have been to be given a second chance (1 person out of 3 who have had a stroke do not survive). I coped with challenges mainly thanks to the support of my husband and of the large community of caregivers and experts I’ve built around fightthestroke. This organisation was exactly the results of our passion for the problem and the desire to use our passions for science and technology to create a positive social impact. I realised that, whatever the problem you have, you should start from what you have, from your passions, from what you can do.
Natalie: What advice would you give a mum who is beginning her journey after receiving her child’s diagnosis?
Francesca: Never be discouraged. Be always a good and positive “mirror” for your child, because he/she feels it and parents’ attitude has been shown to influence the process of healing in kids, especially in the first months of their life with the highest peak on brain plasticity…
Natalie: What is your most important mission that you want to share with the world?
Francesca: The mission I’m bringing forth with FightTheStroke is to connect caregivers, doctors and experts to fill the gap between the amazing scientific discoveries on the brain and their application in therapy (both for children and adults), using technology as Artificial Intelligence as a powerful enabler. In this direction, we piloted our main project, Mirrorable. Scientific research on motor skills recovery after brain stroke confirms that individualised care, early and intensive intervention to treat motor impairments in kids who survived a stroke are critical for the success of therapy.
Natalie: What are some lessons and blessings you have learnt since becoming Mario’s mum? Natalie: Do you have a favorite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Francesca: I am proud to be Mario’s mum. I am convinced that there is a huge potential for improvement in the field of treatment of brain diseases, if we only use the results of science and establish therapeutic alliances. The IAPS network is a good example for me.
Natalie: Do you have a favorite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Francesca: As I often say, also as a title for my book, “Fight and smile”
If you would like to share your miracle moments and special needs journey, please get in touch here.
#themiracleproject “Uniting our stories across the globe”.