Life with The Leivas: Gamma Phi Beta Convention Photos

Wednesday, July 2, 2008

Gamma Phi Beta Convention Photos

I've put together a few convention photos. Some of these might not make sense (why are there hundreds of women walking around with hot pink hats with carnations?) but I guess I can just say it's a sorority thing. John McCain was staying in our hotel for a few days and he did stop by briefly for a photo op. He seamed nice enough but he does look a little frightened in the picture, what normal man wouldn't be a little frightened to see 800 sorority "girls" running at him with cameras. One of the highlights was a concert by Elizabeth Pitcairn current owner of the Red Violin and a Gamma Phi Beta. Apparently Elizabeth and the Red Violin both lived in the Gamma Phi Beta house at the University of Southern California. The violin travels with it's own private guard!

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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.