Haya came into the world two months prematurely, beginning her life with challenges no parent is ever prepared for. Instead of bringing our newborn baby home, our first days as a family were filled with hospital stays, medical care, fear, and uncertainty. It was incredibly difficult watching our tiny baby fight and not knowing what her future would hold. As she grew, we began noticing significant developmental delays, and when Haya was one year old, genetic testing finally gave us an answer: Smith-Magenis syndrome (SMS).

Today, at three years old, SMS affects almost every part of Haya’s daily life. She is still unable to speak and cannot tell us with words when she is hungry, hurting, frightened, or what she needs. She struggles with chewing and swallowing solid foods, has significant sleep disturbances, and requires ongoing speech, occupational, physical, behavioral, and developmental support. SMS also affects her ability to learn, communicate, regulate her behavior, and develop independence.

As her mother, I want Haya to have every opportunity to communicate, learn, become independent, and experience all that life has to offer. Supporting the SMS Research Foundation means supporting research toward better treatments and, ultimately, therapies that target the underlying cause of SMS—for Haya and for every family living with this rare disorder.