Life with The Leivas: Washington DC

Tuesday, October 12, 2010

Washington DC

Over the Columbus Day weekend we took a last minute trip up to Washington DC. It was a quick trip, we left after Mike got home from work on Thursday evening and arrived early Friday morning. On Friday we hit the town via the Metro. Peter and Olivia loved riding the metro and I couldn't believe that it was Mike's first time on the metro! The weather was beautiful during our trip and we couldn't have asked for a better weekend to enjoy in our nation's capital. A girlfriend of mine had loaned me a Washington DC guidebook which turned out to be very helpful. We headed to the National Cathedral and had a picnic lunch then we walked down Embassy row. On Saturday we headed over to the National Zoo. The zoo doesn't have a ton of animals but it's a beautiful zoo and you can't beat the price (free). The kids were exhausted but Mike and I decided to make a quick drive through Georgetown before calling it a day. We ended up having to cut our trip a little short because the kids were not feeling well but we had a great time and it was a beautiful weekend.

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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.