Life with The Leivas: North Carolina, the fun stuff....

Monday, March 30, 2009

North Carolina, the fun stuff....

So our trip to North Carolina included trips to the Duke University Medical Center and the Center for Development and Learning at the University of Chapel Hill as well as a short trip to Ft. Bragg. Obviously it wasn't a vacation and we spent more time in various hospitals than anywhere else. Despite that we were thankful that we were all together and we did make time for some fun family time as well as trips to Chick-fil-A and McAlister's Deli!

The Chapel at Duke

Two Little Monkeys Jumping on the Bed

We loved the sunshine and the warm weather!

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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.