What Life Is Really Like for FAMILIES Affected by Dravet Syndrome - Rébecca Hubert
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YouTubeEpilepsy Sparks Insights - with Torie Robinson
What Life Is Really Like for FAMILIES Affected by Dravet Syndrome - Rébecca Hubert
Today we explore the lived reality of Dravet Syndrome from the perspective of families. Rébecca Hubert, a parent and Vice Secretary of Alliance Syndrome de Dravet, shares how life with Dravet unfolds across childhood, shaping daily routines, emotional wellbeing, family dynamics, and much more beyond seizures! The talk highlights why ...
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Our special needs journey only two short seizures last night. This is our morning getting ready for Christmas Eve with family today. Cooper suffers from daily seizures caused by DRAVET syndrome, a rare form of epilepsy. We share to spread awareness of life is like with a rare syndrome#cooperstrong💜🙏 #fyp #specialneeds #life #christmas
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Our special needs journey only two short seizures last night. This is our morning
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Running 26.2 miles takes strength, grit, and heart—qualities every Dravet family knows well. That’s why today, for Warrior Wednesday, we’re celebrating the incredible members of Team DSF who took on the NYC Marathon in honor of our community. 💜 Congratulations to Mike, Amanda, Beatriz, James, and Stewart for going the distance. Together, you’ve raised $45,120 and counting! These runners pushed through every mile to raise awareness and funds for Dravet syndrome, carrying our mission with them ev
Running 26.2 miles takes strength, grit, and heart—qualities every Dravet family knows well. That’s why today, for Warrior Wednesday, we’re celebrating the incredible members of Team DSF who took on the NYC Marathon in honor of our community. 💜 Congratulations to Mike, Amanda, Beatriz, James, and Stewart for going the distance. Together, you’ve raised $45,120 and counting! These runners pushed through every mile to raise awareness and funds for Dravet syndrome, carrying our mission with them ev
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4K views · 37 reactions | Laney McGowan was first diagnosed with Dravet Syndrome when she was four months old and had her first seizure. Dravet Syndrome is a rare form of severe epilepsy that causes Laney to have seizures for long periods of time. Watch the story of Laney's determination and tenacity after sustaining a stroke just before Christmas by watching the story here: https://loom.ly/noZvBik | Blythedale Children's Hospital | Facebook
4K views · 37 reactions | Laney McGowan was first diagnosed with Dravet Syndrome when she was four months old and had her first seizure. Dravet Syndrome is a rare form of severe epilepsy that causes Laney to have seizures for long periods of time. Watch the story of Laney's determination and tenacity after sustaining a stroke just before Christmas by watching the story here: https://loom.ly/noZvBik | Blythedale Children's Hospital | Facebook
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Tonight turned after these two seizures. Coopers 13 and this is our family journey battling DRAVET syndrome, one of the rarest forms of epilepsy due to a mutant Gene in his brain. ##cooperstrong💜🙏##fyp##specialneeds##life##awareness
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Tonight turned after these two seizures. Coopers 13 and this is our family journey battling DRAVET syndrome, one of the rarest forms of epilepsy due to a mutant Gene in his brain. ##cooperstrong💜🙏##fyp##specialneeds##life##awareness
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