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 Kathy Morgan in United Kingdom as a reflection of her daughter’s life and recent WSS diagnosis.
By Kathy Morgan, United Kingdom
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 [that causes WSS].
She was diagnosed with dyspraxia and other non-specific learning difficulties as a child and eventually at 27, she also got her autism diagnosis.
In 2019 we finally got the WSS diagnosis. It was a huge relief to both of us and the final piece of the jigsaw.
We connected with other WSS families by joining the WSS family gathering in the United Kingdom and went to the family day in Leicestershire in Summer 2021. We shared our story, and finally knew that we were with likeminded souls.
In looking at the WSS children, I could see Sarah at every stage of her life.
Sarah got married to Lee almost three years ago, and although her physical effects of the WSS get more challenging as she gets older, she has the support from social services. Sarah is very happy having finally met her prince 🤴.