Eliza is 12 years old and suffers from Niemann-Pick disease, type C. It is an inherited disorder which attacks the brain and leads to gradual loss of all biological functions.
A rare inherited disorder, with only a couple 100 ill children in Poland and worldwide, Niemann-Pick affects the management of fats in the body, causing harmful amounts of lipids to accumulate in the spleen, liver, lungs, bone marrow, and brain.
This leads to gradual phasing out of the functions necessary for life. Such ordinary activities as walking, talking, swallowing, and eating become an ordeal. The progress of the disease can be effectively hindered only by appropriate medication.
Eliza’s older brother, Michał, also had this disease. He first lost the ability to walk, speak and swallow. Then he had problems breathing, and eventually, he died at the age of 14.
Our daughter, Eliza, shows such symptoms as shaky hands, difficulties with walking and speaking and loss of concentration. Since September 2009, she has been taking a drug, which has helped keep the disease at bay. The neurologist confirms that it has significantly benefited her health, and the medical parameters have improved.
However, there are still serious problems with her condition. The only drug available, which has been approved and registered by the European Commission since January 2009, Zavesca (Miglustat), is not refundable by the Polish National Health Service. At present, it costs $11,300 per pack, which lasts for 21 days of treatment. On top of that, Eliza needs rehabilitation to stay self-reliant.
We cannot afford to pay for it all by ourselves, and therefore we urgently need support. Please support us in our efforts to finance the treatment and rehabilitation of our daughter.
We are thankful for all the help we have received so far. It has been a real blessing and has helped us not to give up hope. Yours sincerely, Daria and Dariusz Baniccy (Eliza’s parents).
If you wish to become a donor and help with Eliza’s treatment and rehabilitation, please transfer your contribution to the account of the “Bread of Life” foundation.
To learn more about the disease, click HERE.