Life with The Leivas: Texas Traditions

Monday, March 19, 2012

Texas Traditions

We ran out of checks. Really who even uses checks anymore, we were still using checks printed with our address 3 moves ago. Anyway, we ran out, and I may or may not have just ordered the Texas Traditions checks just to drive my dear husband from Louisiana a little bonkers. Some may say it's wrong to do something that you know will deliberately irritate your husband, but I just can't seem to stop smiling about it. I'm not saying I would ever do such a thing, after all it really is all about charity and a portion of the purchase price from our check order will be donated to the Alamo Fund for preservation of the Alamo. That's all that really matters, right. It's not like I paid the extra $1.50 to have the slogan "God Bless Texas" added (and yes, that was an option so it could be worse).

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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.