Life with The Leivas: Peter's Room Makeover

Sunday, January 9, 2011

Peter's Room Makeover

I've been busy doing some MAJOR reorganizing around here, cleaning out closets, going through the garage, rearranging the furniture. Peter is not quite ready for a big boy room but it was time to get rid of some of the nursery items. We had an old coffee table that I made Mike pull out of a dumpster right after we'd moved to Washington. The thing is surprisingly heavy and has held up well through 3 moves. I re-purposed it into a train table and Peter LOVES it. The crib bedding is gone, replaced with sheets and a blanket made by my mom. I moved in a bookcase from upstairs and moved his toy bin out. Olivia's room is next, but the projects I have planned for her room are a little more involved!

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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.