~Lakevia Ward Testimony~

 "My name is Lakevia, and I was born in Tennessee in 1988. I was a full-term infant diagnosed with Necrotizing Enterocolitis (NEC) at birth. At just two days old, I underwent my first major surgery to remove 90% of my large intestines. When I was five months old, I had a second surgery to reconnect my bowels. My mother was told that I would be fine with no long-term complications and that my intestines would grow back. Sadly, that wasn’t true. As a child, I was often sick and frequently battled fevers. During adolescence, the long-term effects of NEC began to surface. I experienced severe, painful menstrual cycles & widespread body pain. Unbeknownst to me, an ovarian tumor had begun to grow. I was told that painful cycles & the issues I endured were “normal,” so I didn’t think to question it. Neither my mother nor I were ever informed about the long-term effects of NEC, something that still frustrates me deeply today. In 2011, I underwent a 3rd major surgery to remove a large ovarian tumor from my right ovary. The cause was a frozen abdomen—a condition resulting from severe scar tissue & adhesions caused by NEC extensive surgeries as an infant. That experience changed everything. It pushed me to begin researching & learning more about NEC & its lifelong complications. A frozen abdomen causes chronic inflammation, fluid buildup, and cysts that continue to grow. I’ve had to become my own advocate because resources & medical understanding for NEC survivors with long-term effects are extremely limited" 

" In 2019, I attended my first NEC Conference thanks to NECsociety.org. For the first time ever, I felt heard, valued, seen, & understood for something that seemed invisible. That experience inspired me to begin advocating! I begin advocating, not only for myself BUT for others who share this journey. Through advocacy, I found PURPOSE. When I shared my story at the conference, I realized how few people knew about the long-term effects of NEC or that survivors even existed. My story became a testimony of HOPE! It's proof that life after NEC infancy, though challenging, is POSSIBLE. The long-term effects of NEC are both nutritional & neurological. I endure both. I experience electrolyte imbalances due to losing most of my large intestine, leaving me prone to dehydration. NEC also disrupts the infant gut-brain axis. I’ve also been diagnosed with fibromyalgia, degenerative disc disease, chronic dry eye. I have some white matter injury from birth, which causes headaches & cognitive symptoms/challenges. I live with daily pain, numbness, confusion, & fatigue. These invisible symptoms are rarely discussed, yet they impact both physical & mental health. Physical illness can DEEPLY affect your mental well-being! That’s the part of NEC survivorship I want to also bring awareness to. The part no one else talks about. NEC survivors often lack both medical & mental health support. The long-term effects may not always be visible, but they are very real! My journey/story is one of HOPE, HEALING ,COMMUNITY, and PURPOSE. I share my story to inspire, give Hope, build community, provide support & empower other survivors, families, and medical professionals".