Tot with Kidney Disease Inspires Action and Promotes Awareness

r-LAEvanBeierMost 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.

Then, this past March, his mother gave him life for the second time when she donated her kidney to him. It was a rare operation–doctors at UCLA performed a blood-type incompatible transplant, removing Evan’s antigens that would have rejected his mother’s kidney. It was the first ABO-incompatible pediatric kidney transplant that was performed at UCLA.

“Evan was given a chance at having a real life with his transplant,” Alison said. “We didn’t realize how hard dialysis was for him until after he received his kidney.  He’s got a ton of energy now and has been having normal, healthy growth spurts in all areas of his life.  He enjoyed life before, but today he’s a fully spirited participant.”

Evan’s family are now helping spread awareness of kidney disease and giving hope to other families going through the trials of kidney disease.

“We want to be able to give back,” Alison said. “Evan wouldn’t be alive if it wasn’t for the technology, the Medicare coverage and information that has been advanced by organizations like the National Kidney Foundation.”

In October, the Beiers attended the Los Angeles Kidney Walk.

“I walk to support others, to let them know that kidney disease is not the end,” Alison said. “If kidney failure is on the horizon, there are options, diets and treatments to sustain life.  For those at risk, lifestyle changes may be able to prevent future kidney disease.  Whatever the prognosis, there is hope.”

1 thought on “Tot with Kidney Disease Inspires Action and Promotes Awareness

  1. What a wonderful story! My son was also born with kidney failure, his was due to the birth defect PUVs. We were told he would be stillborn or die shortly after birth, then even when he was able to breathe on his own, we were told he needed dialysis, but they didn’t recommend it. We moved him to a different hospital! He managed to make it 10 months before starting dialysis and when he was 5 years old I was lucky enough to donate my kidney to him. He had his transplant at UCLA in June of 1997. We live in Montana, so it’s always been a bit of a trek for any of his care. He will turn 21 years old this April and that kidney is still going strong almost 16 years later! I would LOVE to get in contact with this family if they are interested! I know a little guy who is just a newborn and is struggling with peritoneal dialysis, it’s just not working and I wondered when Evan started hemo…..maybe I can give this other family hope?

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