Wear Pink or Yellow to Celebrate World PVNH Disorder Awareness Day on Aug. 7th
August 3, 2014
Organization: PVNH Support & Awareness
Join PVNH Support & Awareness, families and friends and wear pink or and/or yellow clothing or accessories on August 7th to celebrate the third World PVNH Disorder Awareness Day and what would have been Ella Dupont Bedassie’s 6th birthday.
Instead of having a birthday party with dozens of her daughter’s friends, Ella’s mom, Yolaine, is faced with remembering her daughter’s birth after losing her to Periventricular Nodular Heterotopia with Ehlers Danlos syndrome (PVNH4), a rare brain disorder, in March 2009. Ella was just 7 months and 20 days.
Although Ella died undiagnosed, her mom fought to find anwers and a few months later when a diagnosis was finally confirmed, Yolaine created PVNH Support & Awareness, the international neuronal heterotopia community, to help others who like her family were facing a PVNH diagnosis. There are now more than 200 families in 19 countries part of the PVNH Support & Awareness network community.
You can show your support on Twitter, Facebook, Instagram, blogs, etc., using either #PVNHawareness or #PVNHday ; find out more about Ella’s story at www.PVNHsupport.com and most importantly, have fun on #PVNHday to show your support to PVNH families and to wish Ella a happy 6th memorial birthday!
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