Life with The Leivas: Photo Slide show of Olivia's Duke Journey

Sunday, October 4, 2009

Photo Slide show of Olivia's Duke Journey

Here's the link to a slide show I created of Olivia's Duke Journey. You may notice that the music is especially catchy! The song was created especially for Olivia by the Songs of Love Foundation. If you would like to get your own copy of Olivia's song (and support Songs of Love) you can go to www.songsoflove.org then click on the Family and Friends Song and Ringtone Download link. You will need to type in our Last Name and then the Record Number is 19781.

Enjoy!

Click to play this Smilebox slideshow: Duke Journey

Make a Smilebox slideshow

1 comment:

Rebekah said...: Thank you for putting such a smile on my face tonight. Love ya'll!; Sunday, October 04, 2009 9:29:00 PM

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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.