Life with The Leivas: Pictures, Pictures, Everywhere

Monday, June 1, 2009

Pictures, Pictures, Everywhere

A new friend of mine takes amazing pictures. She majored in photography and is just starting her own photography business (let me know if you want her contact info, I'm happy to put you in touch with her). I have paid hundreds of dollars for photographs of Olivia over the last three years and I don't like a single one of them half as much as any of the pictures that she's taken in the last couple of days. A few weeks ago she took pictures of Peter and yesterday she took some family pictures of all four of us. I can't wait to see the ones of all of us but in the mean time here are just a few of my favorites of Peter. Of course I think he's the most adorable little boy in the world!

3 comments:

Tina Cordova said...: Wow! Laurie you have a beautiful little boy! These pictures are amazing.; Monday, June 01, 2009 2:57:00 PM
Penny said...: These are such beautiful pictures Laurie!; Tuesday, June 02, 2009 9:38:00 PM
Ashley said...: awww, thanks Laurie! I'll take free advertising any day! :-D I'm so happy you love them!; Wednesday, June 03, 2009 5:56:00 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.