Life with The Leivas: The Sweetest Thing

Saturday, December 12, 2009

The Sweetest Thing

Olivia and Peter cannot wait to see each other after nap time. If Olivia wakes up first she constantly tells me Peter is sleeping in her loudest voice until Peter hears her and wakes up. If Peter wakes up first he races into her room (the doors to the bedrooms don't really close in the apartment) and climbs up into her bed. This afternoon he beat me there and this is what I found.....

2 comments:

Wendy Leiva said...: That IS the "sweetest thing"! Priceless pictures and memories. One day they will probably drive each other crazy and you can pull those out and show them how they used to adore each other!; Saturday, December 12, 2009 10:10:00 AM
katherine_m_gilmore said...: omg LOVE LOVE LOVE it!!!! they are so stinkin cute!!!; Sunday, December 13, 2009 12:01:00 AM

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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.