Kamil Krasowski

The Krasowski family is filled with love and pride. Like most families, they are busy, but they always make time to be together. Quality time is the most important thing to the Krasowski family, and they enjoy spending time together taking long walks in the forest, playing games, and traveling.

Parents Joanna and Rafal have built a wonderful family and work hard to support it. Currently, they are both pursuing Master’s degrees in Criminology and Justice while working and caring for their children. Their youngest daughter, Nicole, brings them light and happiness. Their oldest son, Kewin, has earned a Master’s degree in computer science and works hard to help support them.

Their middle child, Kamil, has Multiple Sulfatase Deficiency (MSD). Kamil’s mother describes him as the strongest person in the world.

The Krasowski family moved from Poland to Wrexham, UK, in 2008, and soon after, they realized something was wrong with their son, Kamil. They first became concerned when Kamil was around four years old. They noticed that he was not developing at the rate of his peers, most notably in regard to his communication abilities.

Like so many other families touched by MSD, Kamil had a long road to a diagnosis. Kamil spent eight years undergoing a plethora of medical tests, consulting various specialists before the 100,000 Genomes Project provided the answer. Although it was not the answer the Krasowski family had hoped for, they were grateful to finally have an answer. 

Kamil has not let his diagnosis define him. He recently graduated from college and enjoys staying active. He especially enjoys swimming, listening to music, spending time with friends, traveling, trying new foods, and playing with his cat. Kamil is now 23 years old and continues to push himself daily to keep his body in good health. Joanna beautifully described his resilience, stating, “Even when he is in pain, Kamil knows he cannot stop because he believes that one day he will receive the greatest gift of his life—treatment for this terrible disease that stops him from living the way he wants. One of the strongest things we can do in this world is not lose hope, and Kamil has done just that.”

Kamil is an inspiration to his family and those around him.

The Krasowski family has found hope and support in the United MSD Foundation. The community helped them realize they are not alone in the fight against MSD. “MSD has completely destroyed lives, not just for our family but for many others as well,” Joanna reflected. She emphasizes the importance of raising awareness so that one day, there will hopefully be effective treatments for those affected by MSD.  

Written By Holland Whitaker (Student Ambassador)