Jessica Aufman

Jessie and Dylan, May 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

Tuesday, June 24, 2008

Today is Jessie’s third anniversary of her transplant. It is pretty unbelievable to think about all she has been through in these 3 years. She is still so happy and really doing better than ever.

Jessie’s summer program (Pegasus) starts on Monday. She had such a good time last year and I can only imagine it will be the same this year. It was at Pegasus last summer that her walking really improved. Now, she has had surgery and relearned how to walk and is cruising around causing lots of trouble. She has really come a long way in a year.

Life is pretty busy in our household. The summer is filling up with lots of fun activities. Matt and I have been to some Red Sox games. I almost feel like a regular again. The family will be making a couple of trips, including a flight to Kansas City for Ron and Jenne's wedding. Wow, 2 flights in 1 year—that doubles the number of times the kids have flown! I know Ron is looking forward to dancing with Jessie on his wedding day (and with his new bride, of course).

As things get busier, we try to remember to slow down and enjoy things together. It is so easy to get caught up in the constant schedule of activities. We are so blessed for Jessie’s continued good health and happiness and we try to take time to just be thankful.

Read Journal History

Hospital Information:

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

Links:

E-mail Author: cjcornish@yahoo.com

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.