Jessica Aufman

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

Wednesday, June 3, 2009

I just had to share the great news that Carleen, Jessie’s one on one for the past 2 years, will be moving with Jessie to the elementary school next year! Matt and I are ecstatic! Most importantly, I know Jessie will be thrilled to see Carleen again after the summer. Carleen has been amazing with Jessie. What really blows my mind is how Jessie does certain things for Carleen that she won’t do for anyone else. For instance, Jessie has this way of letting Carleen know when she needs to use the potty. They have some sort of nonverbal communication that I am not privy to. Jessie will use the potty for me but it is more of a hit or miss kind of thing—she certainly is not letting me know when she needs to use it. Also, Jessie could eat at the Four Seasons with Carleen. No mess, no fingers in the mouth…it is kind of crazy. I am just so thrilled to have Carleen as part of our family for another year! It makes this transition just so much easier.

Everyone here is good. Matt and I were able to enjoy our 9th wedding anniversary a couple weeks ago and we have a whole weekend away planned for the end of June. We haven’t been away as a couple since Jessie was released from the PICU shortly following her birth. I would say it is LONG overdue!

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.