Results for "light up for rare"

At just 3 yrs old our daughter Annabelle Jane Griffin ‘AJ’ was diagnosed with a very rare medical condition Vascular Ehlers-Danlos Syndrome, it is life… Continue reading Annabelles Challenge

Had it not been for the quick thinking of my husband, I am not sure what might have eventually happened to me. Already having been… Continue reading Be Proactive

Hello, my name is Ethan , I would like to share with you a little about myself and the important quest I have joined to… Continue reading Ethan’s Story

I was asked to write a short description of my beautiful daughter Christina – Vassiliki , to integrate the personal stories of emotional content ,… Continue reading Η ζωή μου με έναν άγγελο -Christina, Rett syndrome

I have Stiff-Person Syndrome (SPS), a rare neurological disorder affecting about one in a million people. In 2006, I discovered I had a broken back,… Continue reading Kicking SPS – Fight On !!!