Charlie & Bobby’s Story

Learn from families impacted by NEC who participated in the NEC Symposium in Chicago.

Charlie and Bobby, twins, both developed NEC overnight. They both endured multiple surgeries, ostomies, and transfusions just to survive.

Though Charlie and Bobby eventually left the NICU, NEC has left a lifelong mark on their bodies and on their lives. Now, as the twins approach adulthood, they continue to live with the devastation of this disease. 

“We left the NICU, but NEC left a lifelong mark on their bodies, and on our family.”

Lelis, Charlie and Bobby's mom

What Helped

  • Empathy and compassion from the care team 

What Hurt

  • All the uncertainties surrounding NEC
  • Feeling isolated

What To Do

  • Communicate with compassion and clarity

  • Include families as partners in care
  • Advocate for advanced NEC research 

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Learn from families impacted by NEC who participated in the NEC Symposium in Chicago. ...
Learn from families impacted by NEC who participated in the NEC Symposium in Chicago. ...
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