Okay readers, here is a part of me that I am so passionate about. You look at your child and have a flood of emotions and hopeful future expectations. Maybe seeing them in their little pink tutu during a ballet recital, or being that soccer mom/dad. It is your mission in life to protect them; we want to protect our children from anything that could hurt them. However, have you ever stopped for a moment and think what would I do if anything happened to them? Some may say no and that is completely understandable. We don't want to think about anything bad happening. Yet there is a killer. A crude, emotionless, silent killer that is taking away the lives of our children. It's name? Batten's Disease.
Batten's Disease is something so vile that no child has a chance. Imagine you are looking at your child playing in the yard, collecting flowers, finding bugs, making mud pies, and then all you know is taken away. Batten's is a mutated gene that is inherited by both parents. No random testing is done at birth to check to see if your child carries this gene. When it decides to creep out of the shadows, it usually starts with unexplained seizures, vision loss and/or increased clumsiness. As it progress's it causes blindness, mobility loss, no longer able to eat or drink, no longer to speak, no longer to do what children do. The end result is always fatal. There is no cure.
This is miss Sophia. A beauty that is suffering with Batten's Disease. I follow quite a few pages on Facebook of children who suffer with this disease. Every time I see a child lose their hard fought battle to Batten's, it always breaks my heart. There is no question that a cure needs to be found and fast! Educate yourself on Batten's and spread the awareness!
We have to Bee-lieve a cure will be found!
Find Sophia's page below!
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