Our Rare Leon

About Leon

In 2015 Leon has been diagnosed with Niemann Pick Disease type A/B at the age of 1.This disease is an extremely rare and devastating genetic condition for which there is currently not a cure and he is the only one suffering from this disease in Cyprus.

Since the diagnosis, Leon has been struggling with an enlarged liver and spleen, which leads to pressure on other vital organs. Enlarged organs can lead to internal bleeding when Leon, for example, falls over. This is one of the reasons Leon doesn't go to school and is homeschooled. Leon has frequent respiratory infections because his lungs do not function fully normally. He cannot participate in sports activities because every effort is a big challenge for him. In addition, he is not growing properly for his age, has a small body weight and weak muscles. Leon has a very weak immune system, that's why he spends most of his life at home because even the smallest infection can be life threatening for him. Despite all these challenging obstacles, Leon is a cheerful and full of life boy with big dreams.

One of his great dreams is to have friends. Leon is separated from almost everyone except his parents and younger sister Lucy, with whom he spends the most time. Today, Leon is eight years old and you can say that he has experience that an ordinary, healthy kid shouldn't have. He has been through a lot in his short life. As mentioned, there is no cure for Niemann Pick Disease but in November 2022, Leon was selected as the first patient in Europe for enzyme replacement therapy, which may help him live a more comfortable life. Every two weeks, Leon receives intravenous infusions at the Makario Children's Hospital in Nicosia. There are no positive results of therapy yet.

About Niemann Pick A/B

Niemann-Pick is a rare,inherited disease that affects the body's ability to metabolize fat(cholesterol and lipids)within cells.These cells malfunction and,over time,die.Niemann-Pick disease can affect the brain,nerves,liver,spleen,bone marrow and,in severe cases,lungs.