Hello everybody my name is Marcie and my husband is Abel we have 4 wonderful children together and have been married for 8 years. I wanted to share a short story about our new son diego born on December 19th, 2023

My son Diego has Been diagnosed with alobar holoprosencephaly. Holoprosencephaly (HPE) is a condition that changes the way a baby's brain develops. In HPE, the left and right sides of the brain do not separate like they should.

While there is no cure for HPE, treatment is symptomatic and supportive. Some symptoms and conditions caused by HPE are as follows: cyclopia, median cleft lip and palate, seizures, missing front teeth, closley set eyes, small head, multiple hormone deficiencies, feeding difficulties, developmental delays and more. In Diegos case he has close set eyes,problems holding his temperature, horseshoe shaped kidneys, needs to be on a feeding tube, has low thyroid that he is taking medication for, possibly immune disease called skids, and has to be on oxygen.

Babies with alobar HPE (the most severe form of HPE) are usually stillborn or die shortly after birth or during the first six months of life. More than 50% of children with semilobar or lobar HPE without malformations of other organs live to at least 12 months of age.

My beautiful baby boy Diego was born 6 weeks early due to me being diagnosed with placenta accreta so he was also born premature witch caused his lungs not to be fully developed. His head is filled with mostly fluid and is continuing to fill witch is causing pressure on the part of his brain that tell us we need to breath. He spent 10 days in the NICU at OHSU to get him strong enough to come home he is currently at home on hospice care with mommy, daddy, nana and his older siblings taking care of him and doing snuggles.

With not knowing how long my son will survive I am setting up this go fund me to take a little financial stress off my husband and i during this very difficult time so we can be with Diego every day that we have to snuggle with him. Any and all help is so much appreciated to spend every moment with our son while we can.

Venmo or cash app is available as well

$Marcielamb4 cashapp

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