Rare Disease Takes Baby
Boy didn't grow big enough for a transplant

WOWT-Omaha
January 12, 2006

Ezra Workman passed away in December. He was only nine months old. But it's how he lived and what he dealt with that is an inspiration.

Despite his twinkly eyes and sunny smiles, Ezra never knew what life was like without polycystic kidney disease. He had a rare form and had both kidneys removed, only to endure hospital stays and surgeries.

"You could tell it wasn't easy for him," said Megan Workman, Ezra's mother. "I think he was probably in pain all the time but he never expressed it. That was the only feeling he'd ever known and he was happy despite that."

Dialysis is what kept Ezra alive. His family brought him to the Nebraska Medical Center four times per week. The hope was Ezra would grow big enough to undergo a transplant.

Doctor Helen Lovell said an infection is what stole Ezra's future.

"He had the potential to live a full and near normal life," said Lovell, a Pediatric Nephrologist.
Instead, his parents believe Ezra's life served another purpose.

"The time we had with him was short," said Workman. "But we lived it to its fullest. He taught us that life is short, whether its nine months or 80 years."

"Life is about love and it's about trying and you can never give up," said Kevin Workman, Ezra's father. "And I think that's what Ezra wanted to speak to everybody without saying a word."

The Workmans first heard of Ezra's disease when he was diagnosed. His form was rare, but according to the Polycystic Kidney Disease Foundation, PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, down syndrome and sickle cell anemia combined.

To read a 2005 PKD Foundation story about Ezra Workman and his family, click here.