Life with The Leivas: Home for the Holidays

Sunday, December 21, 2008

Home for the Holidays

We've spent enough time as an Army family to know not to ever take being home for the holidays for granted. Mike is due to deploy during the first half of 2009 so we're being sure to treasure every moment. My heart goes out to our friends who are not blessed to be together this year for the holidays. You are in our thoughts and prayers.

All the snow we've had here lately means that Mike has been getting home from work early! How could I get mad at my husband for tracking snow in and taking off his wet boots in the middle of the living room when I saw him having this adorable moment with Olivia.

1 comment:

Anna M said...: how cute in his boots! Happy New Year, Laurie!; Monday, January 05, 2009 7:33:00 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.