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Stand with Leovanni's Family in Their Grief
Donation protected
I am a Kindergarten teacher and one of my students has just recently lost her baby brother to a rare condition. Please see below please help me support her family for funeral costs and medical costs during this difficult time.
Triston Barbour and Marisol Rivera were beyond happy to announce the upcoming birth of their beloved son, Leovanni Mateo Alekzander Barbour. (They couldn't settle on a middle name so he got two!)
When Marisol had her 20-week ultrasound, they found out Leovanni had cerebellar hypoplasia - a neurological condition in which the cerebellum is smaller than usual. Everything else was perfect. They continued to monitor Leovanni, and when Marisol was 37 weeks, going to a normal checkup, they were told they needed to deliver. On October 31, 2023, Marisol gave birth to the most handsome, sweetest baby boy ever. They thought he was only going to be 4 lbs., and he came in weighing 6 lbs. 1oz. Since the very beginning, he's been beating all odds against him! Leovanni was a direct admit to the NICU. Unfortunately, two days after he was born, Leovanni had an MRI done and the results were truly devastating. They revealed that not only did he have cerebellar hypoplasia, he had chunks of his midbrain missing. Absent. Gone. They diagnosed him with something called Brain Stem Disconnect. An extremely rare neonatal abnormality, with only 7 cases reported in the English literature, all dying by 7 weeks of age. Marisol and Triston’s whole world shattered. Just why? Why him? Why me? Why us? Questions they'll never get the answers to. Shortly after finding about his MRI, a palliative care doctor came and recommended Leovanni be on Pediatric Hospice. Two words that should never even go together. It's something nobody wants to talk or even think about. One thing about all of this is that there's no guidebook for parents when they find out their child is dying. Every decision you make carries the weight of the world. Every day could be the last. But he lived and was loved beyond measure. It was truly remarkable how well he did considering his circumstances. There was no cause to any of this, there was nothing the family did or didn't do, it wasn't genetics - it was a true freak of nature. Leovanni passed away peacefully at home in his daddy’s arms on May 19, 2024, at 6 months and 19 days old.
He will be forever loved and remembered by his mommy and daddy, his big sister Adaeigh, and other extended family.
Organizer and beneficiary
Amber Forrest
Organizer
Urbandale, IA
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Marisol Rivera
Beneficiary