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"We have reached the stage of acceptance and trying to live life the fullest despite SDS" Shares Octavian's dad, Raul. Read this Romanian...

"My journey as a mother of a child with a rare disease began when I had my 20-week ultrasound while pregnant with my son Alex", shares...

I wanted my son to see himself as a brave hero overcoming his reasonable fears associated with the pain and uncharted aspects of his medical