Life with The Leivas: Playtime at the Park

Sunday, January 23, 2011

Playtime at the Park

Olivia is doing really well lately. She seems to be more aware of her body and her surroundings. We've taken quite a few trips to the park and she really seems to enjoy it! Olivia also decided to go on the big kid swing. We usually put Olivia in the infant swing because she doesn't hold on and falls off the swing. Lately she's been more aware and has enjoyed swinging on the big kid swing. I don't know if this new awareness is only going to last for a few days or if it's a new phase. I'm trying not to think too much about it and just enjoy it!

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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.