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 Nicole Reeves in USA as she reflects on her daughter’s strength and love for others in navigating her rare journey.

By Nicole Reeves, USA

Thinking about Rare Disease Day, makes me think back on the journey our Lilly has gone on. Watching her face all the big and little challenges has shown me how strong rare can be.

Lilly is a wonderful happy girl who loves to meet and talk with everyone around her. From day one we knew Lilly was special, she started with eating difficulties, which led us to a “failure to thrive” diagnosis. This diagnosis brought us to meet many specialty doctors, but for Lilly, it was just another way to meet people. For mom and dad, it tested our strength, as new parents.

It took us 5 long years to get an overall diagnosis of Wiedemann-Steiner Syndrome.

As parents, it wasn’t the easiest thing to watch your child getting “poked and prodded” through so many tests performed over the years to get this diagnosis. Lilly would go into these appointments with a smile on her face and show little-to-no fear. These traits in her, to me, show her innate strength to face life head on.

Now, 5 years after the diagnosis of her rare genetic syndrome, we are still dealing with the specialty doctors. The specialists may have changed over the years, and Lilly’s attitude going to these appointments has also changed. Lilly has grown into a wonderful little girl with some much love of life and the people in it. She is always curious and has many questions about the world around her.

As parents, we are so proud of the way she continues to handle life, and the people she encounters, even those who may not take the time to understand who she is. She will always be one of the strongest people I will ever meet.