Fund Raiser for Róża Zaręba
During the SALT MINE CUP 2017 tournament we've ran a fund raiser to gather money for treatment of Róża Zaręba.
Róża (Rose) was born on the 7th of July 2008. She was born very small weighing barely over 3lbs. The doctors have suspected Edwards Syndrome, they said that she's no chance of seeing the daylight on her birthday. Sadly her life is a constant struggle with her illness. Trisomy
of the 9th chromosome is the most serious danger to Róża's life. This genetic flaw is described as lethal, children don't even make it to their first year of age. Róża is 8 years old now and still kicking! We believe that if we unite we can save Róża's life. Further diagnosis have been Dystrophy, Dysmorphy and Dandy Walker Syndrome. However that's only the tip of the iceberg. She was born with two sprained knees,
a sprain hip, varus feet, enlarged left ventricle, bold endocarial and an atrial leak. She's suffered three strokes , had blood transfusion done twice. She had an 80db hearing loss, has a large brain dysplasia and numerous cysts. MRI has determined an epilepsy. Muscle contractions, pathology of the motion organs, pain syndromes, spasms, or a hard reflux which makes everyday life very challenging. She's already undergone the surgeries on her mouth and eyes, she was under anesthesia more times than the years she's lived. To have the opportunity to develop and grow she's participating in numerous activities including rehabilitation, physiotherapy, hippotherapy, sensory integration and a complicated neurologopedic therapy. Without them she's no chance for normal life. Even though all those measure have been partaken she still cannot speak or even walk on her own (the genetic flaw causes disturbance in movement). This year a new hope has arisen for Róża as she was qualified for a surgery with an Ulzibat Method called Fiberotomy. At the moment Róża's biggest need and also a chance for a better life is a constant rehabilitation routine including physiotherapy, neurologopedic therapy or hippotherapy, which are sadly very expensive.
"A person is not great for his possessions but for who he is;
not for what he's got but for what he shares with others"
John Paul II