Life with The Leivas: Family of Four

Sunday, November 23, 2008

Family of Four

We're still here, just enjoying each other as we are adjusting to being a family of four! Olivia is still loving the baby and being a big sister. I'm really surprised at how helpful she is! I wasn't expecting her to be so helpful but she loves to get Peter's blanket or his pacifier or bring me the boppy pillow.

Mike's parents were here when we were in the hospital and my parents are here through this weekend. It's been great to have all the help around the house. Olivia has loved the extra attention from her grandparents. We've just been busy spending time together and hanging out.

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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.