V is an adorable, sassy, and incredibly medically complex 3 year old.

She was born very premature, struggled in the NICU and was diagnosed with cerebral palsy at 4 months old. She is and has always been feeding tube dependent, she had respiratory issues, and at some point her issues did not correlate to her history anymore. She underwent more genetic testing and was found to have mutations in the TRAPPC9 gene, but this still does not explain the extent of her issues.

Recently, V lost the ability to be fed enterally and lost all function in her colon. She has a ileostomy placed and a host of complications. She is also struggling with a multi systemic autonomic dysfunction disorder and worsening central apnea, she is having apnea episodes while awake.

V spent February-mid June in the hospital and is struggling to remain outpatient. In that process her case has been submitted to the Undiagnosed Disease Network though we still don?t know enough about what is happening to keep her stable. 

Donations go directly to meals, travel and lodging when visiting the hospital out of town, rent and utilities, out of pocket medical expenses, and other necessities while I am out of work caring for her in and out of the hospital.

Any support, whether through donations or sharing our story, means the world to us as we try to keep V home and keep our family afloat during this difficult time.