Meet Evan B.: 2017 Speak Now for Kids Family Advocacy Day Hero

Posted by Champion for Children’s Health | Co-Written by Alison Beier | July 02, 2017 

Evan is an inspiring and adventurous first-grader who has spent an aggregate of two and a half years of his life in the hospital. His mother, Alison, remembers going into her 23-week ultrasound eager to see the baby’s fingers and toes. Her doctors, however, returned with some critical news — Evan had kidney failure and was not producing amniotic fluid. Without amniotic fluid, Evan would be unable to develop lungs. Without lungs, it would be impossible for Evan to survive. Alison asked the doctor if she should pray for a miracle, and he responded frankly: “there is no miracle. Your child has zero percent chance of survival outside of the womb.”

With the help of extraordinary clinicians at his local Neonatal Intensive Care Unit and the UCLA Mattel Children’s Hospital, Evan defied the odds. Evan’s parents have experienced several challenges associated with caring for a medically complex child. They have laughed and cried and celebrated birthdays in the hospital. Evan has undergone more than 50 surgical procedures including a life-saving transplant, and he is currently healthy enough to live at home. He continues to receive treatment in the outpatient clinic at UCLA Mattel Children’s. Evan’s family believes, “health care is something we all should care about, because at any moment, ourselves or our loved ones could be thrust into the system and be forced to deal with it head on.”

Evan is a dreamer and hopes to be the President of the United States one day. He loves to play baseball, ride his bike and play with his friends. Evan lives every day of his life with a purpose.

Alison explains, “kids are resilient because they don’t know not to be. Evan’s life has been full of struggle since the start, but he has no idea what another life looks like. He only sees his experience and, in his eyes, his life is awesome.”

Help us welcome Evan to Washington, D.C.!

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