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?

#RareDiseaseDay is about raising awareness for people living with a rare disease around the world.
Share your story at 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:

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:

“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:

Carica altri...