Life with The Leivas: So in love

Friday, December 5, 2008

So in love

Peter will be 4 weeks old on Tuesday and I can't believe how much has changed in just a few weeks. Every member of the Leiva family is completely in love! I have started to treasure the time that I spend alone with Peter in the middle of the night when I feed him. The first thing Olivia says every morning when she gets up is "baby" and then off she goes running to find him. She gets so excited when we let her hold, hug, and kiss him that she can barley stand it. Mike can't wait to snuggle with Peter when he gets home from work and I've never seen two people more relaxed with each other than when Peter and Mike fall asleep together on the couch.

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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.