Little Princee (they way she pronounces princess) Mia passed away in 2013 at 3 ½ to a rare Lysosomal Disease called MPS1 or Hurlers.
Lysosomal storage diseases are inherited genetic defects that result in an enzyme deficiency, which prevents cells from performing their natural recycling function. This leads to a variety of progressive physical and/or mental deterioration. Approximately 180 New Zealand families are currently affected. The effects of Hurlers especially, is heart breaking not only for the ones suffering from it but for their families as well.
Mia is such a beautiful angel and was a very strong fighter xxxx Ethan Hayley and I are hoping to raise some money to help Lysosomal Diseases New Zealand. Lysosomal Diseases New Zealand is a charitable trust dedicated to improve contact between families affected by lysosomal diseases within New Zealand, and supporting research into the causes and treatment of lysosomal diseases and improvements in the clinical care of affected people.
In little Princee Mia’s memory we are running in the Colour Run on the 30th of March, so please help us raise a little bit to help other families in need.