Life with The Leivas: Stowaway

Saturday, February 6, 2010

Stowaway

My Mom left and had a long trip home. With all the snow in the north east I'm pretty sure that most people traveling today had airport issues. Her initial flight was scheduled to leave North Carolina at 11:30, and after a quick stop in Orlando she would have been home at 2:30 EST. Instead she left North Carolina around 12:30 flew to Orlando, flew to New Orleans, and then finally flew to Houston, she finally got home around 7:30 EST. I know she's glad to finally be home!

We loved having her here. She was here for 2 weeks but the time seemed to fly by. The kids both really enjoyed having her around. Olivia has decided to rename my mom "grandma" which is much more appropriate the previous nick name that Olivia had given her (Olivia called my mom "pop pop"). We all loved having my mom around and we'll miss her!

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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.