Local Non-Profit Helps Fight Rare Disease for the Unspoken - FOX 42: Omaha News, Sports and Weather; kptm.com |

Local Non-Profit Helps Fight Rare Disease for the Unspoken

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Franque Thompson

ELKHORN (KPTM)- HerVoice is a non-profit organization in Omaha that started in February to fight a rare disease in girls—rett syndrome.  It's an opportunity for young girls to help other young girls be the voice for the unspoken.

"These girls have so much joy out of everything," said co-founder, Taylor Wilson.

"They're perfect the way god made them, but just to see the potential that could come for these girls is really exciting," said co-founder Ashley Meinders.

It began with a special friendship Meinders had with one family and their six year-old-daughter who is diagnosed with rett.

"She teaches me lessons that I mean, pastors or my teachers or my classmates will never be able to teach me. Because she has taught me to really look on the inside of people, because she does not talk because rett syndrome doesn't allow the girls to talk," said Meinders.

Picture a little girl with the symptoms of autism, cerebral palsy, epilepsy, Parkinson, and anxiety disorders.  That's rett syndrome. 

"[They] loose all purposeful hand motion, begin to have ringing of their hands.  Loose the ability to walk, to talk, to feed themselves.  A lot of them have digestive disorders that end up making them have to be fed through feeding tubes," said co-founder Laurel Mikeworth.

"We take skills like that for granted.  Like being able to talk, being able to communicate with each other and being able to walk and just do all these things.  And these girls can't always do that, but they just have so much joy and just seeing them brings you that joy," said Wilson.

HerVoice volunteers spend hours of their time around the city spreading the word about rett syndrome.  One tactic they use to help educate the community is wearing purple tape over their mouths, in honor of their "silent angels" who can't speak for themselves.

"These kids always have such giving hearts and to really having something to put all of their energy and efforts toward and see it be successful.  I think that's just as important as really the rett girls themselves.  All these kids finding out that you really can make a difference," said Mikeworth.

"I definitely see a lot of people getting involved and it's really encouraging to have people, especially so young, to have so many people be willing to work with us and volunteer their time," said Wilson.

And they wear purple for rett syndrome proudly, to represent the voices of the unspoken.

"These girls, they deserve it.  So we're going to work our hardest to make sure that they get it," said Meinders.

October is the international rett syndrome awareness month.  For more information on how to get involved with or donate to HerVoice, visit their page on Facebook.

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