The Banicki Family

Location: Gniezno

Timeline: On-going

Status: Currently operating

Topics: Niemann-Pick Disease, Children with Disabilities

The Description

The Banicki family, exemplary servants to their church and community in Gniezno face challenges above that of the ordinary family attempting to make ends meet in a post-Communist Poland. Michael Banicki, their eldest son (who went home to be with the Lord in November of 2008), suffered from a degenerative disease called Niemann-Pick Disease (Type C) which causes a slow, painful deterioration of nervous system functions. Most children with this type of disease perish between the ages 5 and 15. Michael was 14. Currently, there is no available cure for the disease although certain measures can improve the victim’s quality of life. Recently, Michael’s younger sister, Eliza - who also has Niemann-Pick, began exhibiting more signs of deterioration in her speech and behavior.

The Need

Time is of the essence for the Banickis. Once the damage is done to the nervous system, it cannot be repaired. The Banicki’s biggest challenge is to provide access to these medications before it is too late. Early in 2011, the Polish National Ministry accepted Zavasca, a medicine that stops the progress of the disease, for national funding. While the Polish bureaucrats can be unpredictable, as of April 2011 Eliza was accepted to receive Zavasca at no cost to the family for three years, which means she will be covered until 2014.

The needs are still great for the Banicki family. Eliza continues to need ongoing physiotherapy which is also a financial strain on the family, and her family could be in need of help with funds to provide the Zavasca if things change in the unpredictable Polish government before the three years is up, or if they decide not to continue the funding for Zavasca at the end of the three years.