Life with The Leivas: Christmas Highlights

Friday, December 30, 2011

Christmas Highlights

Our Christmas was full of friends, family, traditions, and the joy that comes from giving and receiving the perfect gift. We began the celebration in New Orleans and then headed to Texas to spend Christmas at LexStone Ranch and then we headed back home to enjoy a little family downtime before the craziness of the new year begins.

We had a wonderful Christmas. We're overwhelmed by the generosity of our friends and family! Olivia has a ton new books and toys (she's happily amusing herself with them as I type). Peter asked Santa for an airplane and was thrilled to receive one on Christmas morning. The kids also picked out toys for each other and it is so heartwarming to hear Peter say he's playing with his cars that Olivia picked out and that he's going to give Olivia the toy drum that he got her for Christmas.

It rained almost the entire time we were in Texas but Peter did manage to convince Grandpa to take him for a quick tractor ride. The highlight for me was getting to spend some time with family and I think Mike was most excited about getting a brand new bicycle!

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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.