Jessica Aufman

All I want for Christmas is my two front teeth (Jessie Nov 2008)

Welcome to Jessie's Web Page. It has been provided to help keep all of our family and friends updated on her progress.

In March 2005, Jessie was diagnosed with MPS III (Sanfilippo Syndrome). MPS III is an inherited metabolic disease caused by the absence of an enzyme needed to break down long chains of sugar carbohydrates in each of our cells that help build bone, cartilage, tendons, corneas, skin, and connective tissue. There is a continuous process in the body of replacing used materials and breaking them down for disposal. Children with MPS III do not produce enough enzymes required to break down complex sugar chains into proteins and simpler molecules. Over time, these sugar chains collect in the cells, blood, and connective tissues. The result is permanent, progressive cellular damage that affects the individual's appearance, physical abilities, organ and system functioning, and mental development. Children with MPS III usually have a life expectancy of 10-12 years.

In June of 2005, Jessie was given an opportunity for a better life by undergoing a stem cell transplant at Duke University Medical Center. Although this is not a cure for MPS III, we are hopeful that it will improve Jessie's quality of life and extend her life expectancy.

Journal

Sunday, January 4, 2009

As one of my fellow transplant mothers recently wrote, the updates start to feel a bit self-indulgent at some point. Jessie’s health is good and she is very happy.

We had a wonderful Thanksgiving and Christmas. The holidays were filled with friends and family. For the first time, Dylan was old enough to enjoy participating in many of our holiday traditions. It was fun watching him begin to understand the meaning of Christmas. Many times he sang “Happy Birthday” when we lit the candles on the Advent wreath. He would begin singing it to himself and then remember that it was Jesus’ birthday and not his own.

One of the high points of the holidays was attending Worship on Christmas Eve as a family. We packed some snacks and thought we might make it about 15 minutes. Both kids enjoyed all the music and candles. Jessie was an angel and truly looked to be enjoying the experience. Dylan is a little too comfortable at church and with our pastors and made a break for the altar on a couple of occasions. We are truly blessed to have a church that accepts and embraces our family.

Everyone is back to their respective schedules tomorrow. The kids back to school and Matt back to work. It was wonderful to spend 2 full weeks together but I can’t deny that it will be nice to be able to get something done!

Happy New Year to all!
Cari

Hospital Information:

Duke Pediatric Bone Marrow and Stem Cell Transplant
We're discharged and HOME!!

Links:

E-mail Author: cjcornish@yahoo.com