Meet Ella.

Ella’s Mom was 20 weeks pregnant when her ultrasound scans began to show some irregularities. After a genetic test at UCSF, seven weeks later, Ella was diagnosed with a rare form of skeletal dysplasia, Spondyloepiphyseal Dysplasia Congenital with a collagen deficiency.  A rare genetic disease that affects Ella's height, spine, respiratory system, and more. Her small stature has led to mobility challenges, requires her to rely on a tracheostomy, and is vulnerable to respiratory infections. 

Despite all this, Ella's life expectancy is normal, and her intelligence is typical (if exceptional!) Ella began Coastal Kids Home Care’s service when she was just seven months old. Ella, now four years old, receives day and night shift nursing, including when she attends school. As part of the Palliative Care Program, Ella enjoys massage and music therapy. Ella’s rare disease does not stop her from being a happy kid. She enjoys going to school, dancing, singing, and watching her favorite shows like Peppa Pig and Bluey. 

“If it weren’t for Coastal Kids, we would not have been able to bring Ella home when we did. The amount of care Ella needed, and all the medical equipment was overwhelming, but Coastal Kids gave us the nursing care and support we all needed. CK nurses were there the day we brought Ella home 3.5 years ago, and now her nurse is attending preschool with her! This wouldn’t be possible without Coastal Kids.” - Ella’s Mom