Nazira Kelly's Fundraiser
Together We Drive Discovery
This August, help shape the future of Smith-Kingsmore Syndrome research
Join me in making a difference for people living with Smith-Kingsmore syndrome (SKS).
This August, I'm raising funds for the Smith-Kingsmore Syndrome Foundation to help accelerate research, deepen our understanding of SKS, and bring us closer to better treatments.
My son, Ezra, age 9, was diagnosed with mosaic Smith-Kingsmore Syndrome (SKS) in August 2019, just before his third birthday. One of Ezra’s biggest challenges is battling seizures. His first seizure occurred at 6 months old. He experiences focal, general, and nocturnal seizures. Ezra is currently taking high doses of three anti-epileptic medications and has a surgically implanted device called a vagus nerve stimulator, to aid in managing seizures. Ezra also requires the usage of oxygen during seizures. Despite all of these treatments his seizures are not controlled. In addition to seizures, Ezra is globally developmentally delayed, he has low muscle tone and cannot stand or ambulate. He is non-verbal and has cortical visual impairment (low vision). Ezra is unable to feed himself and needs complete assistance in preforming activities of daily living. Ezra was recently diagnosed with severe intellectual disability and Level 3 Autism Spectrum Disorder. He participates in regular therapies such as Physical, Occupational, Vision, Feeding, Speech and will soon start ABA therapy. Ezra will not be able to live independently in the future.
Every donation helps drive discovery and gives hope to families around the world. Thank you for supporting my fundraiser and helping me reach my goal.