Patricia Gil Luque

Eric has a rare genetic disease called CDKL5 which has no cure, he suffers from untreatable epilepsy since he was 20 days old, unfortunatelly he not able to walk, hold his head or manipulate. We also feed him through a gtube in his stomach. Giving Eric good quality of life Is very expensive and that Is why we ask for help.

The CDKL5 Association is an NGO for patients with CDKL5 Deficiency Disorder, a genetic disease that causes epileptic encephalopathy and developmental delay with severe motor and cognitive impairment (including absence of speech, inability to walk, respiratory and muscle problems, etc.) It still has no cure, and currently, its treatment focuses on relieving the symptoms, mainly epilepsy. Scientists are investigating advanced therapies to modify the course of the disease. https://aacdkl5.org/

Somos una asociación sin ánimo de lucro que nos encargamos de obtener beneficios para la ayuda de niños con algún tipo de discapacidad (ya sea física, neuronal…), a partir de eventos solidarios, los cuales se realizan a través de Facebook o a través de algún acto solidario presencial. Nuestra prioridad es conseguir que su día a día sea mejor. Siguenos: www.asociacionsolidaridadconnuestrosniños.es https://www.facebook.com/Asociaci%C3%B3n-Solidaridad-con-Nuestros-Ni%C3%B1os-690431001020618/