Today, Monday, February 3, 2020, at 1:08pm our Sonya Ahava Zaila, better known as Sonzee, took her last breath in the comfort of her bed, in her room, in the same house she was brought home from the hospital as she was surrounded by family and friends who loved her beyond measure.
She spent 4 years 11 months and 22 days bravely enduring more pain, discomfort, and challenges than any person should have in his/her lifetime, however, she also spent her life accomplishing more than many people will during their lifetimes while having an unlimited amount of amazing experiences.
Sonzee was the 4th of 5 born children and was born on February 11, 2015, at 5:57am in the same hospital as all of her siblings. She loved her mermie, pacifiers, the color red, being read to, anything shiny, and the sound and feel of crinkle paper. Her favorite songs were "Hooray for Sonzee" and "The Hampster dance". Sonzee enjoyed using her feet as her hands and was known to kick others just for fun, but would also use her feet to communicate by pressing communication switches with them. Sonzee had many unique talents, such as being a master at seizing, eating via her intestines and through a central line, and communicating with her eyes. She milked her queen status by being carried or pushed in an overpriced adaptive stroller due to her limited mobility.
Sonzee's absolute favorite activity was swimming, however, she could also be found driving up and down the sidewalk and the driveway in her pink adapted sports car. Sonzee enjoyed ice skating, roller skating, sledding, traveling in general, cold breezes, dancing, and taking long walks in all temperatures.
Though Sonzee never said a single word, she touched the lives of many and will remain a constant inspiration. She is the reason that a non-profit organization was created to help raise awareness for CDKL5 and to give back to the many organizations that assist in the care and enhancement of quality of life. Her legacy and impact will continue for years to come in various ways.