News
WSS Warrior Spotlight: Spencer
Meet Spencer from the United Kingdom.
His mother, Leanne, shares his journey beginning with her pregnancy and then navigating many WSS symptoms during the early years of his life. At seven years old, Spencer continues to knock down the challenges as he encounters them in his path and is growing into his big personality.
Allison’s Letter to the WSS Community
Dear WSS Families,
I was diagnosed at 27 years old…
Kohen: The Start of a Rare Journey
It is almost rare disease day. It’s made me take a look back on our journey, from finding a diagnosis for Kohen to everything he has been through in his short 4-and-a-half-years, so far.
Sarah: A lifelong Journey to Discover WSS….and her Prince!
Sarah is 40 years old. She had the typical Wiedemann-Steiner Syndrome (WSS) signs and symptoms from birth, but in 1981, nobody had identified the KMT2A gene.
Trevor is Rare – Many, Strong, Proud
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.