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Evanosky Family 
The Evanosky Family, October 2008
From back left, Sonya, Jack, Christopher, Bob & John Evanosky
photo courtesy of Kimberly Dentice of Naperville Portrait Gallery
John and Christopher were diagnosed with metachromatic leukodystrophy (MLD) on January 21, 2005. Jack was also confirmed as having MLD on February 18, 2005.
Metachromatic leukodystrophy is a progressive genetic metabolic disorder that affects the neurological system. Stem cell transplant is the only known treatment that can stop or slow the progression of the disease. According to the doctors, Jack had started showing very early signs of disease progression, but was deemed a viable transplant candidate. He received an unrelated cord blood stem cell transplant at Duke University on April 1, 2005. At this point, John and Christopher's symptoms have progressed too far to be eligible for a transplant.
Timeline
January 15, 2005 - John & Christopher diagnosed with MLD
February 8, 2005 - John & Christopher have surgery to get feeding tubes (mickey buttons)
February 14, 2005 - Jack diagnosed with MLD
March 22, 2005 - Jack admitted to Duke University Children's Hospital and begins chemotherapy
April 1, 2005 - Jack receives unrelated umbilical cord stem cell transplant
May 6, 2005 - Jack discharged from hospital but required to stay in Durham
August 14, 2005 - Jack and Bob return home to Chicago
September 13, 2005 - Jack has surgery at Children's Hospital in Chicago to remove one of his two central lines. Yeah!
November 29, 2005 - Jack is hospitalized for pneumonia at Children's Hospital in Chicago and is discharged on December 15.
December 29, 2005 - Christopher is hospitalized for RSV at Edward Hospital in Naperville and is discharged on January 2
January 4, 2006 - John is hospitalized for RSV at Edward Hospital in Naperville and is discharged on January 8
June 28, 2006 - Jack's central line is removed! At this point, he had lived longer with a central line than without one
September 25, 2006 - Christopher is hospitalized for pneumonia and discharged on September 28
March 26, 2007 - John, Christopher and Jack are hospitalized at Children's Memorial Hospital for rotavirus; Christopher also has pneumonia. John and Jack are discharged on April 1 while Christopher is discharged on April 4
May 16, 2007 - John is hospitalized for pneumonia and a lung empyema and is discharged on May 26.
August 31, 2007 - Jack is hospitalized for vomiting and doctors determine that he has esophageal stenosis. He is discharged on September 1.
October 11, 2007 - John is hospitalized for pneumonia symptoms.
November 11-13, 2007 - Christopher is hospitalized for pneumonia symptoms
March 2008 - John is hospitalized for influenza B
April 2009 - John and Christopher are hospitalized for respiratory issues
People have asked what they can do to help us.
First, we would ask that you pray for John, Christopher and Jack to be at peace and in good health, and pray for strength for Bob and Sonya.
Second, the Evanoskys have started The Evanosky Foundation, which is devoted to funding research for MLD and other related diseases as well as helping families going through similar situations.
We also review the guestbook on this site and we appreciate all of the kind notes.
Thank you for taking this journey with us.
Jack: "I love riding my horse!"
July 3, 2008
The boys!
from left, John, Jack and Christopher
May 31, 2009
Jack riding his new tricycle!
June 7, 2009
John and Jacko hanging out!
March 4, 2009
design courtesy of Katie Wahn
Journal
Monday, June 15, 2009 3:31 PM CDT Christopher and Jack started summer school this morning. They are both going to the same school, but oddly enough, they ride different busses! This is the first time that Christopher has gone to school outside of the home since September, and he is going to a different school with a different teacher, who we met a couple of weeks ago. His teacher seems very dynamic, and said she "cooks" in the class with the kids by having them activate kitchen appliances such as blenders with switches, and then she lets them taste what was made by putting a little bit on their lips (also known as "therapeutic tasting"). It sounds fun! I kept telling Jack he is such a big boy now because he is going to kindergarten at the same school as Christopher and he's not in preschool anymore. He slightly smiled when I said that, so I think he is secretly proud!
I recently got Jack a hand-operated tricycle on eBay, and he does pretty well with it. There is a steering arm on the back, so we can somewhat control where he goes. He cries when he initially gets on the bike, but once he starts riding, he has a great time. He is now getting pretty opinionated about where he wants to go in the neighborhood (always down by the other kids) and we have had "races" with John and Christopher and the other kids. I end up pushing a lot from behind, but his arms are getting stronger.
We have sod laid in the backyard and have outlined where the additional patio walkway will go. We have rough inspection on our elevator shaft this week, and once that is done, we can start punching out the entrances/exits in the house for the elevator. It's coming along slowly but surely!
My sister, Dana, and friend, Pat, joined me for the Run for the Stars on Saturday which was co-sponsored by The Evanosky Foundation. The weather did not cooperate and it rained A LOT! Plus, it was pretty cold! There was still a good turnout and it was for a good cause, but needless to say, I didn't take the kids. I was pleased with my overall time, and I'm still training for the upcoming Chicago Rock 'n Roll Half Marathon (August) as well as the Chicago Marathon (October).
Lots of exciting things are happening down at Duke, and we're opening up our new House of Hope #3 next month! We still need a lot of household items, so go to The House of Hope registry page if you would like to help.
We Win in the End,
Sonya
Read Journal History
Hospital Information: Patient Room: Back at Home in Chicago! The Evanosky Family
Aurora, IL
Links: http://www.evanoskyfoundation.org Link to The Evanosky Foundation
http://www.evanoskyfoundation.org/Evanosky Photo Page.htm Link to Additional Photos
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