Life with The Leivas: Merry Christmas

Sunday, December 21, 2008

Merry Christmas

Since we're leaving tomorrow we had a mini-Christmas celebration here. My favorite and most useful gift so far is our new gorillapod tripod for the camera. We used it to get some great pictures of the whole family!

2 comments:

Elena said...: I can't believe that you got Mike into matching Jammies. I tried that with Kris the first year as a family, and he wouldn't do it.; Sunday, December 21, 2008 11:02:00 AM
The Leivas said...: I know! These are actually from Lands End last year so I am really shocked that Olivia's still fit. They don't have the same pattern this year so I hope they bring it back next year!; Sunday, December 21, 2008 11:43:00 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.