Support for families of babies and children with West Syndrome, Epilepsy and neurological disorders in Jalisco
Un Milagro para Romina AC is the first Civil Association in Jalisco that informs, accompanies and supports families of babies and children with West Syndrome and Epilepsy in Jalisco. Five years after starting, we support more than 135 families in the state; families who, due to West Syndrome and other neurological injuries, find themselves in the need to care for their little ones with different degrees and types of disability. We are a family that with total ignorance faced this Syndrome and had to make blind decisions to save the life of little Romina Paris. https://www.facebook.com/rominaelmilagro/
We continue to face our battle against Childhood Cerebral Palsy, seeking at every step the best quality of life for our beautiful warrior.
During this journey, we have encountered a huge lack of information, delays in diagnosis and conflicts due to ignorance of ourselves and of the medical and emergency personnel in hospitals.
Starting from this exasperating and exhausting experience, the idea of creating a Civil Association was born to share what we have learned about these diseases and give a little of what we have received from wonderful people who have shown solidarity with our cause.
Un Milagro para Romina A.C., is a Private Social Assistance Institution with the main commitment is to help other parents who, like us, face this painful process.
Our project consists of:
1.- INFORM: the more people are informed about the conditions and situations that allow West Syndrome and Epilepsy to develop due to certain characteristics and health conditions, the greater the possibility that they will receive adequate care in the shortest possible time. .
We will try to help them identify the warning signs and symptoms that must be taken care of and taken into account so that they go to a specialist at the slightest warning sign and can attend to their little ones in time. We want to publicize, inform and raise awareness about West Syndrome and Epilepsy in its various modalities to avoid the greatest amount of injuries and sequelae that may be generated by the delay in diagnosis and treatment.
2.- COLLABORATE: Be the communication and support link to direct families with specialists and the appropriate institutions that the diagnosis or situation of their baby requires.
3.- SUPPORT: So that the exhausting situation generated by a child with neurological diseases in low-income families, is at least a little more bearable. Through financial and in-kind aid for medicines, supplies, treatments, etc. As a link with the appropriate bodies and institutions for the care they require and by promoting, locating and managing people or groups that support the most critical situations in their communities.
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Gracias por su labor.