Life with The Leivas: Time to Vote

Thursday, June 16, 2011

Time to Vote

You can help! This summer Vivint is giving away $1.25 million to local charities. Here are the details:
-You must have a facebook account to vote
-You can only vote for 1 charity per day
-The charity with the most overall votes will win $250,000, each of the top charities in each of the 5 regions will win $100,000. Team Sanfilippo is in the East region, right now we're number 2.
-Voting ends on AUGUST 27th!

How to vote:
-Click on the link above
-You will be prompted to log into facebook
-Vote
-Please consider sharing your vote by posting your vote on your wall

Here's a link to a video that another parent put together. Please vote!

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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.