Life with The Leivas: Ready, Set, GO

Tuesday, May 19, 2009

Ready, Set, GO

So Olivia was supposed to be resting after her eventful morning but instead she was playing her new favorite game. She likes to load up her shopping cart with the most random assortment of items: her baby doll, an old newspaper, various items of clothing. Once the cart is loaded up she yells, "ready, set, go" before running off down the hallway into a door. The door has to be closed, the big loud crash as she slams the cart into the door makes the game so much more exciting. I thought it was so cute I just have to share the video.

1 comment:

Anna M said...: Too bad they don't do those grocery store shopping sprees on TV anymore. She would love that!!; Thursday, May 21, 2009 11:17:00 AM

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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.