Life with The Leivas: *UPDATE* Do Your Rain Dance

Tuesday, September 13, 2011

UPDATE Do Your Rain Dance

Good News: The wildfire situation in Texas is much better! My sister's boyfriend and family did not completely loose their houses but it was a close call and they did sustain some damage. Did you know that as a last resort to save a home from being burnt firefighters will dig trenches through the yard around the house? I didn't. It's strange to see a perfectly good house sitting in a huge pile of dirt.

Correction: Although the Green Day song "When September Ends" was adopted as a post-Katrina anthem Hurricane Katrina actually hit at the end of August. Duh! Thanks for pointing that out roomie :)

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MPS/Sanfilippo Syndrome

In October, 2008 Olivia was disgnosed with MPS III or Sanfilippo Syndrome, type B. MPS stands for: Mucopolysaccharidoses. It is a genetic lysosomal storage disease (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.

Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.