This is the story of Luke, born premature in September of 2013, with an emergency twin birth and suffering from right hemiplegia.
Although this diagnosis has arrived after its first year of life, the physiotherapy sessions have started at the age of 3 months, with the aim of combating the hypertonicity that the Physiatra had initially traced to the premature birth. Although the situation was improved, the risk of permanent damage was projected at the completion of the year. After a few weeks, in fact, the Neuropediatrician spoke to us for the first time of ischemic event in the left hemisphere whose confirmation came last April after the MRI.
In these years we have continued the sessions of physiotherapy and our child, albeit in a more awkward way, has learned to walk and also use the right hand while the leg was necessary to use a brace that still uses. Since last October Luca is also followed by a neuropsychomotor who helps him to overcome the relational difficulties and, for other problems, will continue the sessions for a period of time not yet defined.
Before Luke we had never heard of stroke in the pediatric age and when it happened he caught us by surprise also because we had never thought that it could happen at the beginning of his life.
Last January, almost coincidentally, we came to know of # FightTheStroke and entered the group of families of small warriors like our Luke: This sharing has unimaginable power, is like a network, saves you in moments of despair, gives you hope when a parent or one of the young survivors, share a small Great victory and finally favours an exchange of views on the various rehabilitation methods and on the various medical structures. Thanks to this last aspect we have come to know about IRCCs Fondazione Stella Maris that has been following our baby for a few months.
Our experience with doctors and therapists who follow Luca, both in the territory and the Stella Maris, is undoubtedly positive. On the territory we found an important relational network between the various figures of the public service for the evolutionary age and the private nest, which allowed us to use the same rehabilitative principles in all the environments that Luca attends; We also found an equally important interpersonal exchange during the therapy sessions with excellent professionals who, in addition to giving us guidance on how to deal with everyday life, often comforted and helped us not to feel inadequate. At Stella Maris We have found a complete team in the competences and specialized that, in addition to giving therapeutic indications, has framed the current situation and has imputed to stroke exclusively the problems of motor type mentioned above. Luke at the moment does not suffer from seizures, however they can not exclude their occurrence during growth, and despite having achieved good motor skills continue to follow him for the relational difficulties that arises and are not traceable to the stroke.
Our hope for the future is that research can:
-To prevent, through a rapid identification of the various causes, a good percentage of stroke thanks to a good prenatal screening;
-to improve, even in small hospitals, neonatal screening: For example, in our case, despite being hospitalized at birth, have reported 2 suspicious cerebral sonographies and a severe decrease in saturation less than 24 hours of life, we had to Wait a year to understand what had happened;
-To allow, through new techniques and rehabilitative methods, a better quality of life for the little survivors of the stroke.
Finally, we hope that our children can live in a society where differences are a source of wealth and no reason for exclusion, but this does not depend on research but on the common sense of each one of us.
And thanks to Antonina who told us the story of her little Luke. September 2016.