CHARLOTTE, NC (WBTV) - These three kids are all fighting Batten Disease. There are only 7,000 diagnosed cases in the WORLD.
This is Battan Disease Awareness Weekend. Families are encouraged to share their stories on social media.
Knowing that, I thought I'd write something on behalf of 16-year-old Taylor King, shown in the top picture with her mom, and the two brothers, 14-year-old Jeremy and 18-year-old Brandon.
First, some facts:
- Batten Disease takes a child's speech, walking & fine motor skills.
- It causes blindness and seizures.
- Children with Batten rarely see their 8th birthday.
Now for these great kids:
Taylor lives in Charlotte and is called the "Princess Warrior."
Her sister, Laura, wants run in all 50 states to raise awareness. She has hit seven so far (Hawaii is next!) They've raised more than $500,000 for research.
Foundation is currently giving money to a gene therapy lab doing groundbreaking research at UNC-Chapel Hill » http://tinyurl.com/npuphvn.
Brothers Brandon and Jeremy live in Concord.
Their parents are Chris and Wendy.
Older brother Brandon is completely blind. He's on strong medicine to control his seizures. His parents say he loves Spongebob and Beyblade.
Jeremy has limited vision. He loves to play the drums in his middle school's band.
Both boys will go to Cox Mill High School in the fall.
Taylor's mom, Sharon, reached out as did Chris and Wendy. They all said the same thing: They're just parents. They're doing what they can. They want to share stories and talk about their children, especially this weekend.
Makes perfect sense.
You can show support to these kids by telling someone what you just read, or by sharing this post.
For more info on Batten Disease and this weekend » http://bdsra.org/