Support Halo's Journey with Rare Genetic Disorder

Nine months ago, Halo was diagnosed with developmental delay and hypotonia. Since then, she has undergone two surgeries—one to correct an incarcerated umbilical hernia and another to place a feeding tube. She has also had blood and metabolic testing, brain imaging including a CT scan and MRI, developmental assessments, an early intervention evaluation, chromosomal microarray testing, and whole exome sequencing to uncover the cause of her challenges.

This past Friday, the results finally came in: Halo has CTBP1, a rare genetic disorder found in only 16 people worldwide. Overnight, our focus has been on navigating her unique medical needs and ensuring she has access to the care and support she requires.

Raising a child with a rare disorder comes with challenges most families never have to face—feeding tubes, specialized medical supplies, therapy, adaptive equipment, and transportation are all essential for Halo’s daily life. We’re also working toward wheelchair-accessible housing and a larger vehicle to accommodate her needs.

I’m also planning to go back to school for nursing, and this fundraiser will help us create stability so I can pursue that goal while providing Halo with the care she needs.

That’s why I’m launching this fundraiser. A portion of proceeds will go directly to medical research for children with rare genetic disorders like Halo’s, helping advance understanding and treatments. The rest will support Halo directly—ensuring she has the resources, care, and stability she deserves.

Every contribution brings us closer to giving Halo a life full of possibility, care, and hope. By supporting Halo, you’re helping one child—and countless others with rare genetic disorders—thrive.