Life with The Leivas: "God almighty first planted a garden and it is indeed the purest of human treaures"--Francis Bacon

Tuesday, October 6, 2009

"God almighty first planted a garden and it is indeed the purest of human treaures"--Francis Bacon

This past weekend the weather here in Durham was absolutely beautiful! We wanted to spend every second outside but we had to limit Olivia's exposure to the outdoors. The chemotherapy has left Olivia's skin very sensitive to the sun and sun exposure can activate Graft vs Host Disease. Whenever we go outside we're very careful to put sunscreen on Olivia and she has a lot of SPF/UV protective clothing. We also have to be careful of bugs so of course we add bug spray into the mix.

On Sunday we went to Duke Gardens and it was georgous. Enjoy some of our pictures. The Francis Bacon quote above was on a fountain in the gardens and I loved it so I had to share.

1 comment:

Ashley said...: beautiful! The gardens too ;) OH and I just cannot believe how big P. looks!! Growing into such a handsome boy! Aww, so sad we didn't ever spend more time together!; Tuesday, October 06, 2009 11:18:00 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.