Life with The Leivas: On the 5th Day of Christmas

Thursday, December 30, 2010

On the 5th Day of Christmas

On the 5th day of Christmas we loaded up to go look at the Christmas Lights. We went to Santa’s Wonderland just a short drive from my parents house.

Unfortunately we wern’t the only ones with that idea and it was quite crowded. The lights were worth it though and Peter applauded and clapped throughout the 5 mile light trail.

We stopped to visit with Santa

Forced the kids to pose for pictures

Enjoyed hot chocolate and candy canes by the bonfire

Followed by more posed pictures

Which then resulted in a hay fight

If you ever are in the Houston/College Station area for Christmas and you have small children we recommend Santa’s Wonderland (but it is a little pricey and it can get quite crowded so I’d recommend going right when they open or closer to closing time).

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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.