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 Marcy Landman in USA as she shares her pride of her son and all of his accomplishments.

By: Marcy Landman, USA

Jordan is 17-years-old. He was diagnosed with Wiedemann-Steiner Syndrome in July 2021. Although his diagnosis is new, he has had multiple, individual diagnoses throughout his life. Finding out he has a genetic mutation brought everything together. Receiving the news did not change the person he is!

Jordan has always been a free spirited, fun-loving person. Although some aspects of life have been more difficult for him, he has never let anything stand in the way of him accomplishing what he wanted. He is lucky to be surround with people that have showed support. He has never been held back because he is different.

In his short 17-years of life, he has accomplished so much. From the beginning he has prevailed. Jordan has been mainstreamed from grade K throughout his 11th grade year. He participated in all the normal activities of a child. In grade school, he participated in baseball, wrestling, basketball, and football. He may not have been the best but he always put his heart into it.  In the summer of 2021, he joined the work force by having his first summer job. In March of 2021 Jordan passed his drivers permit test. As of January 29, 2022, he is now a legal licensed driver.

Sometimes life has a way of dictating outcomes. In Jordan’s case, he worked and continues to work hard to dictate what his future holds, not what the world has decided for him. Those that know the hurdles he has overcome could not be more proud. Rare is PROUD!!!!