Life with The Leivas: Halloween Part II, The Neighborhood Party (So LONG Overdue)

Tuesday, November 23, 2010

Halloween Part II, The Neighborhood Party (So LONG Overdue)

*Note* I wrote this post weeks ago but then had a hard time getting the pictures from the woman in our neighborhood who took the pictures. I finally got them so I can now complete the post.

I LOVE our neighborhood. It absolutely makes living here in Fayetteville(nicknamed "Fayet-nam" by North Carolina natives not from Fayetteville) worth it. The neighorhood goes all out! There was a party at the pavilion and a haunted nature walk around the lake. Olivia loved being able to run around. Peter was especially impressed with the inflatable Winnie the Pooh.

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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.