Christopher's Story

Welcome to Christopher's Web Page. It has been provided to keep people updated about Christopher.
Christopher was diagnosed with MPS IVA, also known as Morquio Syndrome Type A on April 13, 2004.
Morquio Syndrome Type A, is one of the Mucopolysacchride Disorders.
Morquio is a progressive disorder arresting growth and causing severe bone disease in young children. While there is no known cure, it is every parents dream to see Enzyme Replacement Therapy (ERT) treatment become a reality for all the children living in pain daily.

Journal

Sunday, April 15, 2007 5:08 PM CDT

Yesterday was not a very good day. It started out to be wonderful. Christopher and I had an appointment to meet Dr. Tomatsu, the Morquio specialist at his hotel in Tampa while he was here for a Morquio fundraiser. We were not going to attend the fundraiser though, because I needed to get home, and tie up any loose ends before leaving for Delaware for a month. We drove 2 hours, get to the hotel, and were told that his reservations were cancelled two days ago. I had no way of contacting any one. We turned around and came home, and when I was able to get hold of someone, I was told that his reservation was changed to the hotel next door. He was right next door the whole time. Oh well, maybe next year.

Everything is set with Christopher's surgery. We are flying to Delaware on Tuesday. Christoher has several appointments there this week, before his first sugery on April 24th, which is for spinal decompression and halo placement. His second surgey is scheduled for May 1st, that is for the fusion of C1-C5. We will be staying at RMH, across from the hospital. Neither of us have ever flown before. I'm kind of nervous about that. Please keep Christopher in your prayers through this. I will update as often as possible.

Links:

http://www.mpssociety.org   The National MPS Society
http://mpsforum.com/forum/index.php   The MPS Forum
http://www.morquio.com   The International Morquio Organization.

E-mail Author: crea1@tampabay.rr.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.