Life with The Leivas: 2011 Rainbow of Heroes Recap

Wednesday, May 18, 2011

2011 Rainbow of Heroes Recap

The 2011 Rainbow of Heroes Walk was a huge success! We have to begin with a huge THANK YOU to those of you who were able to donate to the Duke Family Support Program on behalf of Operation Olivia. Unfortunately my trip to New Orleans coincided with the Walk of Heroes so I wasn't able to go. When I discovered the double scheduling I came very close to canceling my trip but Mike insisted that I needed a break. He assured me that he could handle it and he took both kids up to Duke for the event. This was Mike's first time going out anywhere by himself with both kids. I am so impressed! He even took the camera and was able to get some great photos of some of our Duke Family!

Olivia and Ms. Marion (our Social Worker)

Someone had a bit of a meltdown.

Someone else is laid back and ready to go with the flow!

Jayne and Olivia have always had a special relationship.

Dr. Paul and the kids. I think that it's obvious that Olivia knows that the day is pretty much about her and Peter is tired of not being the center of attention.

Dr. Paul will be moving to Pittsburgh this summer as the newly appointed Chief of the Pediatric Bone Marrow Transplant Division at Children's Hospital of the University of Pittsburgh Medical Center.

Balloon Release at the end, Peter didn't want to release.

Thank you to all of our friends and family for their support and a HUGE KUDOS to Mike for taking on the Rainbow of Heroes walk solo.

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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.