West Virginia
Amanda Beane
HUB Leader
In 2011 my husband and I found out we were expecting our first child, we also found out that he would be born with gastroschisis. We were very worried, even more so when I went into premature labor at 32 weeks. Josiah Lee Nathaniel Beane was born via c-section weighing 4lbs 12.5oz, he was immediately prepped for surgery to place his intestines back inside his abdomen. He spent 3 months in the nicu and had 2 more surgeries to fix obstructions before going home. As he got older we noticed he had lots of motility issues and he also built up scar tissue very quickly. He had several additional surgeries and in November of 2013 at just 2 years old he had his 7th intestinal surgery and unfortunately he passed away shortly after. After his passing I joined Avery’s Angels as the HUB leader for West Virginia and I’m so glad to be able to share Josiah’s story with others and reach out to our local families. So far I’ve done two interviews with a local news station about gastroschisis awareness, I’ve drafter a letter to our governor to proclaim July 30th gastroschisis awareness day state-wide, and I’m currently planning fundraisers and community outreach projects. Supporting families affected and informing others about this birth defect is very important to me. I know that my son is looking down smiling because he’s so proud of all I’m doing in his memory.
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