Beaumont girl fights for her life supported by hundreds on social media

Ten year-old Emily Neild is suffering from Mitochondrial Disease, a rare progressive disease that can affect every major organ in your body.

BEAUMONT - Hundreds of Facebook users from all over Southeast Texas and the entire country have been inspired by following the courageous fight of a ten year-old Beaumont girl who is in a fight for her life.

Emily Neild is suffering from Mitochondrial Disease, a rare progressive disease that can affect every major organ in your body.

As of Tuesday afternoon almost 800 people have liked and are following her story on the Facebook group, "Embracing Emily's Story."

Most little girls dream of one day becoming a ballerina.

Their hopes and dreams are captured through the lens of cameras snapping every moment at each and every dance recital capturing hundreds of memories over several precious years by adoring parents like Andrea and Taylor Neild.

The Neilds have three boys, including a set of twins, and Emily.

Emily's mom describes her as a ballerina in the making.

“Of course, when she was first born my hopes and dream was that she would be this amazing ballerina because I knew how much she loves dance, Andrea Neild said.

“What they used to be and what they are now are totally different. We had to adjust our way of thinking as far as our hopes and dreams go. Our hope is that there is a treatment that comes up or a cure or the progression stops all together. My hope now is that she has more good days than bad days," she said.

When it gets really bad, Emily ends up in the hospital and recently, she’s been in the hospital a lot.

After more than two years of searching for why their once active little girl was starting to deteriorate, they finally got the answer.

“Once we heard she had Mitochondrial Disease, along with a double mutated PCK2 gene, along with Celiac, it takes the wind out of you sails, it takes your breath away, and it’s rare it’s extremely rare there’s hardly any information on it. It’s not something that can be fixed. It’s a multi-system progressive disease," her mom, Andrea said.

MORE | What is Mitochondrial Disease

 There is no cure.  A scary experience for any child. But, Emily has shown tremendous bravery.

“She challenges the doctors she is the brave one. She’s not the scared one," her father, Taylor Neild explains.

Emily stays brave while still dreaming of the dance class and recitals she loves most.

“You have to listen to your teacher. And learn your dances. And it’s fun," Emily says.

Emily is now unable to go to dance class.

Mitochondrial Disease symptoms include muscle weakness and lots of pain, to name a few.

Sometimes she uses a wheelchair.

YOU CAN HELP | Buy & wear  a "Bravelet" in Emily's name

Recently, she got a new backpack containing a machine that supplies her nutrition through a tube.

“It even has wheels," Emily says of the system that helps feed her.

Emily manages to maintain her sense of humor when it comes to her brothers especially one in particular.

“I’m still the boss of him. But he doesn’t think that. I’m still in charge," she says of one of her brothers.

“Once you meet Emily you instantly fall in love with her. She just has that personality once you talk to her and meet her—you don’t have a choice but to love her," says her father, Taylor.

Reading through the posts and comments on the Embracing Emily's Story Facebook group, which Andrea uses to keep everyone updated on how Emily's doing, shows how much friends, family and complete strangers love and are inspired by her fight.

“So this Sunday evening finds us still in the hospital. Today they tried doing some minimal trickle feeds with her G-tube," her mother Andrea  writes on a recent post.

“We’ve been told that Emily has an ileus in her small bowel that’s sort of acting like a functioning obstruction," she writes in another post.

In return posts and comments roll in showing support and love for Emily and her family...

"He only is my Rock and my Salvation., my Stronghold; I shall not be greatly shaken.  On God my Salvation and my Glory rest: the Rock of my Strength, my Refuge is in God. Trust Him at all times, O people; pour out your heart before Him. God is a Refuge for us.”—Psalm 62:2 5-8," writes one follower on the closed Facebook group which consists of almost 800 members.

“Just a simple I’m praying for you.  Just a simple basic text I get when I’m in the hospital with her. Sometimes I don’t’ even know who they are from. It’s like a hug," Andrea says of the messages she receives from the group.

Then there's tons of family support...

“We band together.  We do have a big family so we spend a lot of time together. His family is really strong in their faith," Andrea & Taylor say.

Emily, when asked what makes up being brave when she goes to the hospital, told 12News' Erika Harris...

“My mom," she pauses, then says "and Jesus"

“Just stay brave," Emily adds.

“I envy moms that have healthy kids.  I do. I don’t want to be that way," Emily's mom, Andrea says.

"I just so wish that could be our story but it’s not. But we count this story pure joy. It is joy for us to carry this around with us.  We are so lucky. We were handpicked to raise this little girl. “

“We are blessed by her.  I don’t think she even realizes the impact she has on our lives. She’s pretty amazing," Andrea says.

(© 2016 KBMT)


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