LOVING MEMORY OF OUR ANGEL NIKI DEWITT

Welcome, to Niki's home page. Niki was a joyful 19 month old that lost her battle with MPS1 on May 9th 2004(Mothers Day). She was diagnosed on December 5, 2003 and Niki start ERT treatment on December 17th in preparation for a cord transplant at Childrens Hospital in Chicago IL. We checked into the Kohls house Februray 2004. Niki underwent a mini transplant and when that didn't work we under went another transplant with agressive chemo. She arrested in my arms on April 20th and she started her battle in PICU. Niki developed serivous liver problems due to the chemo. And our angel lost her battle on Mother day May 9th 2004. Through all the chemo and doctors Niki never stopped smiling and laughing she had such amazing spirit and with this it is what gets us through each day. Hurler is a ugly syndrome and when left untreated life expectantly is only 5-10 years. There is no cure for MPS1 or Hurler syndrome. Please feel free to sign our guestbook. Thanks

Journal

Monday, September 26, 2005 8:15 AM CDT

Happy Birthday Niki-- You are 3 today!!!! We miss you so much and love you so much..

This is going to be a very difficult day for me, I knew that when I went to bed last night with tears in my eyes and my heart aching so much that I thought it was going to pop through my chest. Thank goodness for Brian holding me until I fell asleep. It is so hard for me to write in this journal. Because I can't give everyone updates on how she is doing. Or on what crazy and cute thing she did lately. She was my blessing and wow, did she light up a room and now she isn't with us and it hurts something awful!! Our families have been wonderful with their support and love and we all appreciate it so much. This has been a tough time for us all and I know its not going to be easier. We all just have to take it one day at a time one moment at a time. My heart and prayers go out to all those Hurler Children and their families..

Read Journal History

Hospital Information:

Patient Room: 301

Kohls House- Childrens Memorial Hospital
2422 North Orchard
Chicago IL 60614

Links:

E-mail Author: draee67@aol.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.