Life with The Leivas: Be strong and courageous.,...

Tuesday, August 25, 2009

Be strong and courageous.,...

"Be strong and courageous do not be frightened or dismayed, for the Lord your God is with you wherever you go." Joshua 1:9

My scripture reading for today is from Joshua. And I cannot help but be awed by the simplicity of this statement. It brings such comfort to me, I cannot even begin to imagine how many people this same verse has brought comfort to. It is so definitive. There is no room for misinterpretation. It's simple and to the point. I love it.

I just learned a good friend plans to name her baby Joshua, what a beautiful name! I pray that the baby lives up to the name and arrives safe and healthy.

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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.