In celebration of Rare Disease Day on February 28, 2022, the WSS Foundation led a storytelling experience featuring individuals with WSS and their parents. This story comes from Brandy Smallwood in USA as she shares the qualities of her son in defining what it means to be rare.

By Brandy Smallwood, USA

Rare is MANY.

Trevor is a smart, energetic, vibrant 8-year-old boy, who is the one in a million to have the rare genetic disorder, Wiedemann-Steiner Syndrome.

Rare is STRONG.

Trevor was born premature, at 27-week gestation, weighing 1lb 15oz. From the day he was born he has had to fight. Fight to breath. Fight to eat. Fight to walk. Fight to speak. All the things that just seem normal, easy, he has had to fight to do. No matter the sickness, or surgery, or therapies, he continues the fight, all with a smile and giggle.

Rare is PROUD.

Everyday, I am thankful for and so very proud of Trevor. He has, and continues to, defy all the odds that were stacked against him. I am grateful for the WSS family that we have become a part of, and I am a proud WSS warrior mom.