Life with The Leivas: Hurricane Gustav

Sunday, August 31, 2008

Hurricane Gustav

I can't believe how similar this all is to Labor Day weekend 3 years ago with Hurricane Katrina but then again it's all completely different. When Hurricane Katrina hit Mike's parents were visiting Ricky in Washington D.C. and my parents were living in Lafayette. Evacuating was a foreign concept to many people living in New Orleans and so many of our friends and family either didn't evacuate or waited until the last possible minute to do so. Mike's parents house was virtually destroyed as were so many of the other things that I grew to know and love about New Orleans.

This time around it's impossible not to remember the uncertainty of Hurricane Katrina but at the same time things are completely different. Mike's parents have already evacuated and are safe in Georgia. My sister and her family evacuated to Arkansas. We don't know where so many other friends and family members are but this time I'm sure they've left the city. This time it seems like people are really preparing for the worst and expecting it whereas with Katrina they prepared for the best and expected the best. Who is to know what will happen but we're definitely glued to The Weather Channel around here!

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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.