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Tener un hijo con discapacidad severa es estar condenado a estar atrapado en el tiempo. Para siempre, padres/madres de bebés. Pero los cuerpos envejecen, las fuerzas flaquean y los ‘bebés’ pesan 80 kgs. Los parias. Los olvidados. ¿Quien cuida al cuidador? https://www.laopiniondemalaga.es/malaga/2020/01/21/atrapados-vejez-hijo-dependiente/1139919.html

#RareDiseaseDay is about raising awareness for people living with a rare disease around the world.
Share your story at https://www.rarediseaseday.org/tell-your-story to raise awareness!

Tracking seizures, moods, and behaviors over time may help you to recognize patterns, then modify your behavior or lifestyle appropriately. A journal or a diary like the Epilepsy Foundation's My Seizure Diary can be a helpful tool. Learn more: https://bit.ly/2xyYE55

The disorder is characterized by early-onset cluster seizures, cognitive and sensory impairment, and psychiatric and behavioral disturbances. Learn more about the Violet Study and #PCDH19: http://www.violetstudy.com/

“Once we learned Louise had #CDKL5, our lives were changed forever,” Teresa Gorman tells us. “While they may not always be happy times, they are real-life, & we are a stronger family because of it.” For more on our clinical trial for children with CDKL5: http://www.themarigoldstudy.com

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