Help with Bennie’s medical and funeral costs

As many of you know my son Bennie has been in the NICU since his birth on 11/11/2021. He was diagnosed with Propionic Acidemia. It’s a rare inborn error of the metabolism, in short his body is unable to process certain proteins. This can cause metabolic crises in which, among other things, ammonia can buildup in his system causing brain and other vital organ damage and even death. If you would like to read more about this rare and insidious condition information may be found here: https://rarediseases.org/rare-diseases/propionic-acidemia/

At just 5 days old, Bennie began to exhibit the classic symptoms of a metabolic disorder. Feeding intolerance, vomiting, lethargy, and seizures. We found out that his ammonia was about 700 (normal range >45). This caused injuries to his brain.

At this point we made the difficult decision to have him moved to a higher level of care in Salt Lake City. When he arrived it was discovered he had both NEC (necrotizing enterocolitis), and sepsis. Given the severity of these infections in any baby, Bennie was more at risk. He developed lactic acidosis. For four days his lactate read as high as the hospital machines would go — over 20 (normal range >1). This almost always ends in death by multi organ failure within a matter of hours.

We were told to prepare for the worst. We had him baptized while in my arms in his hospital room. We had very difficult conversations about the reality that he may not make it through the coming days. Each day we were able to spend with him was a blessing. 

Though Bennie was on a ventilator, needed medicine to keep his blood pressure up, etc., he FOUGHT. My husband and I were by his side the entire time and we knew our little boy was in there. We just knew his life purpose had not been fulfilled and he has much more life to live. As a last attempt to save him, he was given kidney dialysis to clean out his blood. His lactate recovered.

The next hurdle was his brain. We were told that with survival would come severe brain damage. He was given an ultrasound, EEG, and MRI. The neurology team could not give me a scientific explanation, but they stated, “someone was looking out for him. Not only does he not have brain damage, the injuries he sustained from his high ammonia have healed. His scans were unremarkable!” (The only time you want to hear your kiddo is unremarkable!).

Bennie’s fight was not yet over though. It was discovered that he has a blood clot in the portal vein of his liver. This turned into portal vein hypertension, cirrhosis, and now at almost 5 months old — acute liver failure. Since that time Bennie has fought (and won) against a variety of infections.

We had Bennie transferred to Seattle Children’s Hospital as they are one of the nations leading hospitals in pediatric liver transplants. He was listed early April for a transplant. 

Unfortunately, he again developed sepsis. He fought his little heart out like the warrior he is, but in the end it was just too much for his little body to handle. He passed away peacefully in his mama and daddy’s arms on 4/14/22. 

We are asking for donations to help cover Bennie’s medical costs, cremation costs, memorial costs, and travel and out of work costs that have been/will be incurred during this incredibly difficult time. 

I implore all my friends and family, even if they are not in a position to donate, to like this post, share, and of course pray for our sweet Bennie!

Thank you all!
  • Loreni Marin 
    • $100 
    • 16 d
  • Anonymous 
    • $250 
    • 25 d
  • B Pereira 
    • $100 
    • 25 d
  • Dana Nielsen 
    • $100 
    • 26 d
  • Deborah Longchamps 
    • $50 
    • 26 d
See all

Organizer

Kaylee Conradi 
Organizer
Las Vegas, NV