I am sharing this story about two beautiful little girls that are fighting a rare disease. If a disease is considered ‘rare’, research is probably going to be impossible to fund. Who would want to do all of that work for just a few? Also, these children, all children with a rare disease, will not have drugs specific to their illness because Big Pharma wouldn’t want to produce a drug that they would not be benefitting financially from. These children are living painful, sometimes debilitating, and often shortened lives, and they and their families deserve as much care as any child. Please read:
I Am Not Sick Boy 
Even though the disease has been around since 1903, it is so sad that nothing has been done, because it is a “rare disease”. Good that many celebrities are getting behind this.
Thank you for sharing and bringing awareness regarding Batten Disease, and the struggle that is faced with every rare disease.
~Carl~
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You’re welcome. Thank you, Carl, for stopping and reading the post.
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