Life with The Leivas

Sunday, December 2, 2012

30 days 30 posts

Over the last 10 months updating our little family blog slipped further and further down on the "to do" list. I haven't posted in months. Looking back I am so sad that I didn't make the time to post. I love that I'm able to take a trip down memory lane when I look at our blog and I'm sad that I can't look back over what has happened over the last year or so. I'm challenging myself to post every day for the next 30 days. The holidays are such a magical time, I'm hoping that my goal of posting will help me to. capture some of the special memories we are making.
So here's to 30 days....1 down 29 more to go...

Sunday, August 19, 2012

Sleeping?

This is what I found when I went into Peter's room...guess what movie he watched this weekend:)

First Days

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.