On November 18, 2009, when he was 19 months old, our son Mael was diagnosed with the very rare, incurable, and fatal storage disease Niemann Pick C (NPC). Mael will gradually lose all of his learned abilities, such as walking, speaking, thinking, and swallowing, until he is severely disabled and dies of this disease. Our lives took an unexpected turn with this terrible diagnosis, and suddenly nothing was the same any more. Suddenly we are faced with unimaginable fears and worries, and we are fighting with all our love and all our energy against this disease, so that Mael can live as long and as happily as possible.
The intent of this website is to tell you about Mael’s disease and about his life with NPC. In the "Mael today" section we describe a typical day for Mael and his brothers, with our experiences, worries, and crises. And anyone who wants to do something for Mael or others with Niemann-Pick C can find more information in the „Donating & Helping“ section.
