Life with The Leivas: Happy Birthday Olivia

Wednesday, July 7, 2010

Happy Birthday Olivia

We celebrated Olivia's 4th birthday together on Tuesday evening. We had a great time. It was a very laid back celebration and I think the kids preferred that. Olivia enjoyed the entire experience so much that we are thinking of making it a quarterly thing. And why not? At the very least we're going to continue celebrating her 4th birthday for at least a couple more weeks.

I learned that despite how much time I spend watching "Cake Boss" and "Ace of Cakes" and numerous other Cake decorating shows on TV, cake decorating is not one of my special talents. I am sure that it was a great idea and I'm going to try again someday soon, practice makes perfect. Olivia didn't care though and when she saw the cake her eyes lit up! I am very proud of the Happy Birthday banner I made, it came out beautifully and I think we'll use it year after year.

I love all of these pictures, they're so reflective of our celebration, it was very low key, I love the emotions that we were able to capture on all of our faces. I love that we have these memories!

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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.