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Timothy! 
Thanks for checking in on us. Keep praying! It is working. Here is the latest:
Journal
Thursday, November 25, 2004 1:21 PM CST NEW INFORMATION:
*** The time for the quiet reflection and prayer for Timothy has been changed and will now be from 7:30 to 8:30pm this evening. We made this change because it turns out there is a mass at the church at 6:15. That mass, while not related to Timothy's services is open to the public for those who would like to attend.
*** ALL of Timothy's wonderful family members are requested to gather at the back of the church at 9:45am Tuesday morning to participate in the family procession at the beginning of mass.
We continue to learn so much about God’s will – feeling his love and tenderness, but also feeling frustrated, disappointed, and lonely. We miss our Timothy. We are going to celebrate a funeral mass for him next Tuesday and we know that he would love to have all of you there so he can smile down on all of us together.
Timothy’s Funeral Mass
St. Vincent de Paul Church
2375 E. Arizona Avenue
Denver, Colorado
10 o’clock in the morning
Rite of Committal
Procession to Mount Olivet Cemetery following the mass.
Timothy will be buried next to Annie’s grandparents, Mimi and Ora Ben.
Hugs, tea, hot chocolate, and smiles
Dan and Jan’s house (Timothy’s great aunt and uncle).
Directions will be provided at the mass.
On Monday evening, we will be at our home from 3-5:30 if you would like to drop by.
From 6 to 7, you are also invited to join us at St. Vincent’s for quiet prayer and preparation.
Over the course of the past five and one-half months, we have lived the heartbreak and hope of Sandhoff’s disease and while we will dwell for a long time on this journey and its meaning, we also want to turn and focus on the future. We have met many of the doctors and scientists who are working tirelessly to tip the scales in favor of hope for these children. In the spirit of generosity of our little fighter, we are setting up a foundation to help those doctors find a cure for Sandhoff’s. The most wonderful thing about this quest is that once we are able to beat Sandhoff’s, we will be immediately able to transfer that learning to an entire class of metabolic diseases that affect thousands of children every year.
Finding a way to help all of these children and their doctors has been a frequent topic of conversation for us with Timothy in the Unit, at the apartment, and on our long walks and drives. I am sure that I will be knitting a few hats here and there to send to the kids in the Unit and we will be sending surprise goody bags for the parents every now and then, too. So, the fund will be just one way in which we will try to help. Please don’t feel compelled to donate; we are putting it out there so you can if it feels like something that is right for you. We are not, however, totally letting you off the hook… we are counting on your continued prayers – for the doctors, for the children, for their families, and for a cure. With that, Sandhoff’s hasn’t a chance.
“The Timothy Fund”
FirstBank of Cherry Creek
Attn: Neil Burk
830 South Colorado Boulevard
Glendale, CO 80246
(303) 512-1100
If you are in Colorado, you can go to any FirstBank and make a contribution.
(In the weeks to come, the fund will be rolled into a foundation in Timothy’s name; we will be sure to dot our ‘i’s and cross our ‘t’s so that all contributions will be tax deductible.)
We are going to celebrate Thanksgiving today with family here in Denver and take a few walks and hold hands. Many of you are trying to reach us – we hear you and thank you so much for your prayers and love. Keep ‘em coming… louder and louder!
Love, love,
Annie and Mark
Read Journal History
Hospital Information: Duke Pediatric Bone Marrow and Stem Cell Transplant
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