Respiratory failures, heart anomalies, loss of strength in the arms and legs, weakness in the neck and trunk. These are the set of symptoms associated with children suffering from laminopathy, which is incurable and termed as a `rare´ disease due to its scarce presence. The specific work of the Andrés Marcio Foundation is to improve the quality of life of these children and they need our help to be able to carry out research.
The Andrés Marcio Foundation, children against laminopathy, is a non-profit organization created in 2014 based in Spain, but with an international reach, whose main objective is to extend the life of children with this disease and to find a cure. To achieve this, they need your help.
Laminopathy is a severe congenital muscular dystrophy that is characterized by the absence of motor acquisitions, the loss of the ability to support the head, respiratory failure and heart anomalies. These children have a much larger than normal heart which also beats abnormally, producing disorders in the conduction system and the risk of sudden death.
Specifically, they want to identify the predictors of heart arrhythmias and sudden death in pediatric patients with this disease. To achieve this, they implant an insertable cardiac monitor (ICM) system. This way, doctors can receive immediate notifications and information about cardiac events experienced by the patient. This device is, of course, compatible with the everyday activity of the child.
The project was headed up by Doctor Georgia Sarquella Brugada at the Hospital Sant Joan de Deu in Barcelona, monitoring 29 patients worldwide and managing to save the lives of three children in Spain. All of the proceeds, thanks to the production of this video and the promotion of the #VocesDelAlma campaign, has served to help research into predictive systems for cardiac arrhythmias and sudden death in children affected by laminopathies.