Life with The Leivas: Spaghetti

Saturday, June 5, 2010

Spaghetti

3 comments:

Taryn said...: Laurie, he is just beautiful, or very handsome I guess I should say! He has your eyes and his adorable semi-curls melt my heart! The recent pics I have seen of Olivia are quite the heart tuggers too! You are so blessed. I know some times with all you guys are going through it might not seem like it, but think about those of us that the docs say can't carry our own biological children. Adoption is a beautiful thing and we feel SO blessed to even have it as an option and a sacred gift, but some nights I lie in bed and it is very difficult realizing I will never get to experience what it is like to carry our child or look at our baby's beautiful face and see Dedrick's unforgettable smile. Not that any of what I just said makes one bit of what you are going through any easier, but I guess my point is, like I tell myself with all my health issues every day, it could always be worse. I am so proud of you and Mike. Your strength is so admirable and you are courageous beyond words. As always, I love you and I miss my best friend! Please give the kids a big hug for me!
XOXO
Taryn; Sunday, June 06, 2010 2:50:00 AM
The Hatchers said...: Truly one of the cutest spaghetti pictures I have ever seen!!!!
What a doll!; Tuesday, June 08, 2010 10:23:00 PM
Ashley said...: HE IS SO ADORABLE!!! I can't even stand it!!!; Wednesday, June 09, 2010 4:14:00 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.