Life with The Leivas: Soaking it in

Thursday, June 25, 2009

Soaking it in

Just time for a quick update. Olivia is still going through her pre-transplant work-up, one appointment or test at a time. My parents arrived on Wednesday night to help out and pick up Peter. I've got such mixed emotions about them being here. On one hand it is so nice for them to be here! On the other hand they are here to pick up Peter and take him home with them for his "mini deployment". I'm trying to soak up every last second I have with Peter before he goes.

1 comment:

Elena said...: I can't believe how strong you are. Hang in there. At least you know that Peter will be well cared for. We are praying for you guys.; Thursday, June 25, 2009 11:18:00 PM

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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.