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Moms Raising Awareness About Gastroschisis Across West Virginia

Reported: Feb. 24, 2014 12:11 PM EST
Updated: Feb. 24, 2014 12:40 PM EST

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CHARLESTON, W.Va. (Katelyn Sykes) -- Last year before Christmas Eyewitness News brought you the story of Amanda and JD Beane. Their son, Josiah, was just two years old when he died from gastroschisis, a condition where a baby's intestines stick out through their abdomen.

Amanda and JD donated all of his Christmas to the Salvation Army's Angel Tree.

Now Amanda is on a mission to raise awareness about the condition that took her son's life and she's teaming up with another mom who shares a similar story.

Kristin Nossaman's son was also born with gastroschisis eight years ago. Together these moms are raising awareness and want other families going through the same thing to know they're not alone.

For Amanda, looking at pictures of her son, Josiah, bring back a lot of good memories.

"He was just so loving and so fun," she said. "He went through a lot. He was in the hospital most of his life I'd say but those little moments, the little smiles, the little laughs. It was great. He was such a happy little kid."

Josiah was born with gastroschisis and went through seven surgeries before he passed away at only two-years old.

"It was really hard on us because we didn't really have a whole lot of support," Amanda said. "We were kind of alone."

So that no other family will feel that way, Amanda has become the hub leader in West Virginia for Avery's Angels, a worldwide organization dedicated to gastroschisis awareness.

"I want to be there to tell them that they're not alone and that there's hope," she said. "There's lot of survivors, there's lot of families that can give them advice."

And she's not alone in this fight. Nossaman's son, Issac, was also born with this birth defect and is now eight years old.

"It's just so scary walking into it," Nossaman said. "You don't know what's going to happen. Every single case is different. It's not like setting a broken arm where you put a cast on the arm and it's going to be fine. It is a dance of one step forward and 15 steps back constantly."

Everyone is at risk. One in 2000 babies are born with this defect and 40% of those children have lifelong issues with it.

Amanda and Kristin are not only raising awareness but money for care packages for these families so they can be supported emotionally and financially.

One way they're doing so is by holding a pancake breakfast on Saturday, March 1 at Applebees in Southridge. Tickets are $5 and available at the door and all of the money raised will go right back to Avery's Angels.

Amanda has also drafted a letter to Governor Earl Ray Tomblin to proclaim July 30 as Gastroschisis Awareness Day in West Virginia.

"We have traveled this journey and though we have different stories we both have a connection through what we've gone through," Nossaman said.

"I don't think I would have been able to do it without my son, Josiah," Beane said. "I know that he's supporting me through this. I know that he's not here with me but I know he's very proud of me. He's such an inspiration for me to help other families."

Amanda said they're also hoping to hold a dinner at the Ronald McDonald House in Kanawha City on Mother's Day to connect with families going through what she and Kristin went through.

"There needs to be more advocacy for us," Nossaman said. "People need to know what they're walking into without having the worst case scenario thrown in their face. They need to know that it is definitely something that can be overcome."

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