Life with The Leivas: A Very Special Person

Monday, August 22, 2011

A Very Special Person

A very special person in my life is my Grandmother. I love her dearly and words cannot even begin to express how special my relationship is with her. My Grandmother recently celebrated a birthday. Last year we were able do spend her birthday with her and almost all of my extended family at her 90th birthday celebration. This year we weren't able to squeeze a trip in but thanks to another very special person in my life (my cousin Katy) and her blog I almost feel like I was there. I'm so excited that we're going to be moving closer to family and I will be able to see my Grandmother more often.

To see a few pictures from the birthday celebration click on over to my cousin's blog: Me & The Boys

1 comment:

Me and The Boys said...: you are so sweet. we missed you at the celebration but can't wait for you to be closer to Texas. Love you loads.; Tuesday, August 23, 2011 8:36:00 AM

Post a Comment

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.