Bennie's story: 5-month-old boy waiting for liver transplant has died

Bennie, a 5-month-old son in need of a liver transplant, died Thursday morning, according to his family.

Bennie was born with a rare metabolic disorder called propionic acidemia, and was being treated at Seattle Children's Hospital. His family has been praying for a living donor to step forward and save his life, and according to his mother, an overwhelming number of people signed up to help. Unfortunately, Bennie passed away Thursday morning. 

His mother, Kaylee Conradi, gave FOX 13 this sad update Thursday night:

"Unfortunately Bennie contracted sepsis and went into septic shock. The doctors were not able to bring his blood pressure up with max doses of the usual medications, and even with meds not generally used in pediatric care. As quickly as we had hope, he slipped downhill. He passed away in our arms, my husband was able to catch a flight in, this morning at 10:43 am."

His mom has been by his side every step of the way since he was born in Las Vegas in November.

"He’s the feistiest individual you will ever meet," said Conradi. "He’s a duck enthusiast. He has a little beanie baby duck he absolutely loves."

Conradi said her son was a fighter and a miracle baby and gave them the strength to push forward.

"He’s unable to process certain proteins and if he does, ammonia can build up toxins in his body. He can go into organ failure and die," said Conradi. 

Bennie became very sick soon after he was born, with symptoms that included lethargia, loss of appetite and projectile vomiting.

At one point, the family was told Bennie would only live for 24 hours after he went into lactic acidosis, which means he had an extreme amount of acid in his little body, levels that have generally killed adults.

Conradi thinks back to a picture when Bennie was baptized at the hospital. It was shortly after receiving the grim news.  

"The emotions this picture brings up, that we really thought that would be the only family picture we’d ever have with Bennie, and we’re so glad that it’s not and that he’s still here," said Conradi. "We just hope he gets that liver, and he’s on the road to recovery."

After undergoing dialysis, Bennie survived and doctors could not explain it, but he also did not have any brain damage which was expected. Recently, the five-month-old was suffering from acute liver failure. 

"They told us at Primary Children’s Hospital that if he didn’t have a liver transplant, he would likely die, but they cannot do it on a baby that small."

After doing extensive research, Conradi found Seattle Children’s Hospital, and Bennie was placed on a priority list to receive a liver transplant. 

"Status 1B is for somebody who is very, very sick and will die without a liver and that is what Bennie is in," said Conradi. "Every night I go to bed, my vision is just taking him to a park at like two and seeing him run and play and just be that happy, healthy, little boy that we’ve always dreamt of for him."

Conradi said a living donor must be at least six months post-partum which disqualifies her as the donor, plus she’s a known carrier of the gene for propionic acidemia.

The family is updating the community on a gofundme campaign that was set up to financially support the family through this difficult time. Conradi left her job to care for Bennie full-time. 

If you’re interested in stepping forward as a potential donor to help someone like Bennie, you can visit the UW Living Donor Liver Transplant page and fill out a questionnaire.

Donors must be 18-60 years old, have no major health issues among other criteria. 

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