Life with The Leivas: After the rain

Monday, May 24, 2010

After the rain

It's rained here for the last 3 days. This evening the rain stopped and the sun peeked out for a bit. The kids went to bed a little early tonight, 7 for Peter and 7:30 for Olivia. Mike got home and I decided to go for a walk. It's been a really long time since I've gone for a walk without pushing a stroller. I was able to follow my walking program and alternate between a moderate and a brisk pace. When you're pushing a 30 lb stroller with 60 adorable pounds of passangers it's difficult to enjoy the simple act of alternating your pace. I was able to complete my walk in record time too! It was beautiful outside, everything was fresh and new after the rain. I realized that the entire time we lived in Washington I missed that fresh, after the rain feeling. It rained in Washington all the time but it was a constant mist, there was a constant dampness in the air. We never got to experience that freshness that comes after the rain. It's nice to be back in the South!

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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.