Life with The Leivas: Wow

Wednesday, May 5, 2010

Wow

This morning as I was enjoying my coffee and doing my daily devotional there was a moment where I was truthfully and honestly thankful that Olivia has Sanfilippo syndrome because it's brought me a more personal relationship with God and a closer relationship with my husband. It's deepened my appreciation of motherhood, and enjoying life, and treasuring the simple things. This moment won't last forever, in fact the doubt and fear is already creeping back in but wow, what a moment. I want more of those!

"Create in me a clean heart, O God, and put a new and right spirit within me."--Psalm 51.10

"Lord, I don't want my soul to feed on empty pleasures, to long for what belongs to someone else. Instead, increase my hunger for you and create in me a pure heart, one that you will find irresistibly beautiful."

---All from the Catholic Women's Devotional Bible

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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.