Life with The Leivas: and....Done!

Thursday, December 15, 2011

and....Done!

No I'm not bragging about how I'm done with my christmas shopping, to tell the truth I've BARELY started.

In the last 5 weeks I've boarded a plane 10 times, worked 8 Alumni Events and traveled over 6000 miles. I. am. so. done! I'm so excited that I will be sleeping in my own bed (at least for the next week or so until we head to Texas for Christmas at LexStone Ranch)

1 comment:

Anonymous said...: Wow you have been busy. I have followed your blog and enjoy reading your updates. I always thought you might return to Steilacoom/DuPont. Olivia looks great keep up the bloging and have a wonderful HOLIDAY SEASON. Ms. Helen; Friday, December 16, 2011 10:33:00 PM

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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.