No one expects to have fun in the hospital, especially kids, but “fun” is exactly what some patients at UCLA Mattel Children’s Hospital experienced recently during a visit by the Los Angeles Lakers.
Several UCLA Mattel Children’s Hospital Instagram posts featuring, Alison, her son Evan, and her family. Some unlikely surprise guests featured, such as: Camila Cabello, Nancy Pelosi, and the Los Angeles Lakers.
Alison Beier’s son, Evan, was born two months early with renal failure, a malformed urinary tract and multiple congenital anomalies. While still an infant, Evan was stuck in the hospital for several days after doctors insisted that he needed an automated blood pressure monitor with an infant-sized cuff before they would release him. Neither his public nor private insurers would pay for one.
Many California children with serious health care needs often wait months, or even years, before they receive essential medical equipment like custom wheelchairs, shower chairs and hospital beds, according to a recent report.
For some children, these long waits aggravate existing health problems, cause pain and pressure sores, or exacerbate developmental delays, said the report, published in May by the Lucile Packard Foundation for Children’s Health.
Eight-year-old Evan Beier tells his UCLA Urology physicians that he will one day be elected president of the United States. Based on his positive attitude, can-do spirit and ability to overcome the odds that have been against him since birth, no one is about to disagree.
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.”
A series of tweets, written by California Senator Kamala Harris about her impactful visit with Alison’s son Evan.
UCLA Mattel Children’s tweets, highlighting Alison’s son Evan’s (and family) visits with federal legislators.
Alison’s son Evan highlighted on UCLA Mattel Children’s Hospital’s Facebook account.
Children’s Hospital Association held their 13th annual Speak Now for Kids Family Advocacy Day in Washington, D.C. July 12-13. Our family, which includes 7-year-old Evan who has multiple congenital anomalies, was asked to represent UCLA Mattel Children’s at the event. Much like a Family Voices of California (FVCA) Health Summit & Legislative Day, we were prepped upon arrival for our meetings with legislators the following day. In fact, the entire legislative day mirrored our experience at FVCA’s Health Summit in Sacramento this February.
CA Assemblymember Al Muratsuchi’s Facebook post after his visit with Alison and her son Evan. Photos of visit included.
Alison Beier’s son Evan is highlighted in the Beverly Hills Courier “To See and Be Seen” section after swooning the audience in attendance at the Los Angeles Make-a-Wish Winter Gala.
Most parents think their children are miracles, but Alison Beier and Daniel Benner’s three-year-old, Evan, truly is the embodiment of the modern miracle.
While he was still in the womb, doctors realized Evan’s kidneys had failed due to problems in their development. The prognosis was grim. “Many doctors told us our child had no chance of survival,” Alison said. When Evan was born at 32-weeks, doctors still thought he wouldn’t last the night, but he did, and spent his first 168 days between two hospitals. He was eventually placed on hemodialysis. All the while, his mother and father struggled to get him to a proper weight so he could receive a life-saving kidney transplant…
Alison Beier’s son Evan featured on the cover and middle of Chase Foundation printed materials.
“Through this blood cleansing process at UCLA, Evan, who is type A, could receive a kidney from his mom, who is type AB. In a two-step process Evan undergoes IVIG, where antibodies are isolated from donated blood and high doses are infused into Evan. This helps keep his body from attacking a donated kidney after transplant.”
“On the day of his birth, Neonatologists told Alison and Dan that in their entire career, they’ve never seen a child survive Evan’s set of circumstances and their newborn would, with 100% certainly, die before the night was over. Evan was born with a collapsed left lung and malformed right lung; requiring the help of a machine lo breathe. Knowing what they’d known the entire pregnancy Alison and Dan cherished every second they had with their son that night; for Alison, it was only a brief moment in the operating room, where she would place her lips on her baby boy, tell him she loved him and was proud of him, then watch as he was rushed away. They focused on gratitude and rigorous prayer that fearful night into the next morning.”