Xavianna is a beautiful 4 month old medically complex baby girl who has spent her life in the hospital. Her parents, Nizohni and Kyle, have been supporting her and advocating for her throughout her medical journey. As Xavianna gets older and stronger, Nizhoni and Kyle are hoping, with your support, they can discharge from the Neonatal Intensive care unit (NICU) and travel home to make memories as a family.

Xavianna’s medical journey began before she was born when she was diagnosed prenatally with Myelomeningocele, also known as the birth defect spina bifida. Nizhoni and Kyle traveled from their home in Tuba City, Az to Denver, CO to receive specialized treatment at Children’s Hospital Colorado. Xavianna’s was unexpectedly born early at 27 weeks gestation. She was admitted to the nicu for intensive medical support due to her extreme prematurely and spina bifida.

When she was two months old, Xavianna was also diagnosed with a rare genetic condition known as SPTEN1. This condition is associated with seizures, brain volume loss and developmental delays. It is also progessive meaning her symptoms will become more serious and impactful as Xavianna gets older. Other babies who have been diagnosed with this condition have only lived for a few years. And the medical team worries for Xavianna’s life will also be limited by her genetic disorder.

This medical journey has been emotionally challenging and heartbreaking for Xavianna and her parents. Despite the challenges, Xavianna’s parents have shown great strength and resilience. They have stayed with Xavianna in the nicu in Denver to care for her, snuggle her, play with her and help her make meaningful memories in these early months of her life. As Xavianna gets older and stronger, Nizhoni & Kyle wish to take their baby girl home and make memories with her and their family and friends before her genetic condition continues to progress.

Nizhoni and Kyle are asking for support to purchase plane tickets and necessary medical equipment that they need to travel home. They appreciate any kindness you can offer during this difficult time to get their babygirl home! ❤️