Friends and Supporters,
Our next story is about another SYS warrior, Deanna from Colorado. Deanna is now 14 years old, but we met her for the first time when we attended the Schaaf-Yang Syndrome conference in 2023 when she was 13. Courtney and I vividly remember the moment when we met Deanna. We were making introductions for the first time in a large group of families attending the conference. The parents of children with SYS were introducing themselves and their children. However, when the microphone got to Deanna’s mother, Jamilyn, Deanna reached for the microphone. Once she got the microphone, she introduced herself to the group. There was not a dry eye in the room when she did this. This is a core memory that will never go away about the hope we have for Hayden.
Deanna has developmental delay and intellectual disability, like most of her SYS friends. She has fewer motor functions than typical kids and her day-to-day activities take longer and require more effort. She also requires more assistance than typical kids. Deanna’s biggest challenges are physical stamina and length of time at a physical activity. She is also overwhelmed easily by noisy places and overstimulating environments.
However, this doesn’t slow Deanna down. Her mom describes her as witty, sassy, smart, and charming. Those are all qualities we have seen firsthand when we’ve been with her! Her challenges do not seem to affect her thoughts about herself, and she is a happy girl that dreams big. One of Deanna’s recent accomplishments is earning a letter for Unified Flag Football from her high school! I’ve also seen a video of her on the basketball court and she is a natural.
Deanna’s parents’ lives have not been without trials and tribulations having a child with special needs. They must plan a lot more in advance, pack a lot more “stuff” and make sacrifices, which sometimes includes not bringing her along or not being able to attend certain events. However, they feel honored to have Deanna in their family. She has blessed them and made them laugh. Her wittiness and sassiness keep them on their toes! Deanna has taught them to not to take anything for granted, and they live each day to the fullest.
Deanna’s parents’ dream for her is that she grows up to be happy and live a fulfilling life. They hope her health won’t prohibit her from feeling good and changing the lives of all those she meets.
To donate to help to continue to fund research to help find therapeutic therapies or a cure for SYS, please donate at www.faithforhayden.org/donate.
With love,
Matt and Courtney
